Tuesday, March 20, 2012

They Shoot Children

Tonight I started packing for my vacation tomorrow. Out of the blue fell the pamphlet David gave me years ago. We had met at a booth Amnesty International was sharing with a group for Irish Freedom. I do not remember their name although I still have the booklet and bumper sticker. David gave them both to me as a reason to keep talking that afternoon so many years ago. The bumper sticker simply says "Give Ireland Back to the Irish". I had no idea that they were a front group until I showed my mother. She turned pale and handed it to my father. He just replied that he hoped I had not given them any of my money. When I asked why, not telling my parents I had in fact given them two dollars (I wanted a reason to keep talking to David), my father simply replied "They are an IRA Front, but I am sure you knew that". No, but thank you Dad for the history lesson. Let me just say I did not take David home to meet my parents after the first date

So here is the cover of that pamphlet. From Information on Ireland

They Shoot Children
The Use of Rubber and Plastic Bullets 
in the North of Ireland

Even the title of the booklet gives away the Nationalistic views of this group. They consider themselves a legitimate part of Ireland, not the United Kingdom. 

Monday, March 19, 2012


The last few days have found my thoughts filling toward many ideas of closure. Last night I finally copied the last of David's 43 microSD cards. The man stored everything on these cards. He used them in a similar fashion to the way I use my thumbdrives. All his documents are scanned and stored in .pdf or .jpeg formats.  His work products are also stored on these cards, as are his childhood photographs and videos. The tax returns I had prepared for him, all were stored on a single microSD Card. He separated them once again  into smaller sub-folders for both regular and contractual employment.

Sorry for the distraction. This last week what caught my attention was a set of nine videos. Each appeared  to take place in some shared lawn area near his Mamo (grandmother)'s home. They are rather easy to date as one of his older cousins celebrates a birthday at this annual gathering. Subtract three candles off the cake and you have David's age. At the fourteenth birthday party a very different David enters the lawn area. Where the years before he had been an open and gregarious little boy who called the camera over with his entire  body, the sparkling green eyes are now closed off, guarded and protected.  He spends his time, not in the middle of the common area as years before, but literally on the outskirts of the family gathering. He doesn't want to see or be seen. The following year, by lunch time he is half way to inebriated. None of the adults appear upset one way or another by this. David is twelve.

Viewing these videos really began my mind wandering. What could be so upsetting to a young boy that we see on video such a change in behavior? The first thing to pass through my head was the Irish Catholic Church scandal . If this was the case I do not believe David would have converted to the Orthodox Faith. That would not be his style. I firmly hold that his conversion was political, as many of his decisions were in life.

Perhaps he witnessed something violent. Considering his place of birth as well as his socio-economic status this is a very real possibility. So into Google I went. 1985 Belfast, 1985 Troubles Northern Ireland.  Once I geographically narrowed down my search to rid myself of soccer scores I went to YouTube.  It was here that I hit paydirt. I found videotapes of news broadcasts. Men murdered peacefully. Armed stand-offs. Multiple funeral Masses, some featuring masked IRA volunteers standing above graves. These men fire their unregistered weapons in honor of the fallen. The Irish Tricolor flag is placed over coffins in one last, and illegal, act of defiance. The most disturbing of all of this is the calm with which this was reported, as if it was common news.

Earlier today I spoke with the Medical Examiner's office. I explained that Paul and I both  suspected that David's toxicology screen would light up like a Christmas Tree for opiates/alcohol/cocaine/benzodizapaimes and phenobarbital. How could it not when he had received many of these drugs as prescribed, and when did not he had access, he had the desire and ability to purchase them.  She agreed, and let me know unless something unexpected shows up the results should not affect the cause of death, which is still pneumonia. She said something about the tox screen also having results that may affect a parallel investigation. I have no idea what she is talking about, nor do I honestly care unless it impacts me. Its been a hard few weeks and I'm learning to become selfish. Kill me.

Finally, I had the chance after over a decade to talk to David's Mum in Belfast. She is such a wonderful, strong and beautiful woman. We shared over an hour of our time together today, and this is before we made plans to meet up in Manchester at the end of my New Orleans trip. She told me she knew she had lost her son forever the day I walked out on him  She explained that from the way he had talked about me and acted when we were together, if that did not stop him from using, she knew her son was unaware of his own priorities.

I needed to hear that. More importantly, I needed to hear it from his mother. The last few weeks I have felt as if I am constantly searching for who I am. The thing is, I've known who I am the entire time. It was my relationship with the other players that was starting to define me. I no longer feel that I am betraying my husband if I miss David. I know the only person I would be cheating is myself if I start feeling guilty about missing Paul while he is away. Her words released me to feel again.

Wednesday, March 14, 2012

Out the door

Just like good dutiful Jane should, I filed my time card before sitting down to write this. It is not like I actually was doing work for the majority of the day though. Instead my time was spent attempting to make coffee at work and make some lunch, during which the new building systems power shorted out on me, twice. I spent more time than I should have on Facebook chat through my husband's telephone. I curled up into a ball. Then I tried to cry again. At one point good dutiful Jane almost punched the wall next to her computer monitor. That would have brought in the necessary change in my day, shouldn't it?

Then why, oh why, am I still half crying, half angry, half filled with mixed emotions that don't have any place at all? Perhaps it is simple. Perhaps I am suffering from HALT. That pesky buzzword stands for Hungry (have not eaten a bite since last evening), Angry (my friend and ex-boyfriend David just died of AIDS before he hit 40, my husband Paul is dying from a neurological system that is breaking down, my close sister is abusing cocaine) Loneliness (the only person inside my house right now is the ex in his box of ashes while my husband is over at rehab) and Tired (Last night my sleep consisted of two hours in broken up periods between replays of Guns And Roses meant to block out said sister from being in my visual or audio range).

This are only the large things that good, dutiful Jane is dealing with. She also feels responsible for two seven year old children who lost their father to AIDS and their abusive mother to the court system because good, dutiful Jane did what she was taught and called Child Protective Systems on the twins. Jane is also in charge of their entire trust for the next eleven years as her day job is good, dutiful Certified Public Accountant.

Then there is the matter of souls for you see in her night job, Jane is a good dutiful caregiver to her husband and their friends. When friends are at times of need it is to Jane the nurses naturally turn and to whom they listen. Therefor it is Jane's responsibility to make sure all aspects of these friends physical, social and religious care are taken care of properly.   In other words, Jane had no reason to doubt David many years ago. If he said he was going out weekly to take a class offered by the local college, that should have been the end of it. Instead after his death she learns he was attending courses at the local Orthodox Church. WTF?

So when a friend presents himself as an atheist, good dutiful Jane has no reason to doubt this fact until it is too late. By too late I do not mean M*A*S*H version of last rights on the big toe, I mean dead, out the other end of the crematorium and died in mortal sin type of too late. The kind of sin you can not just wish away because it will make you feel better but the get your ass to confession last week type of mortal sin. The "I chose to end life giving treatment" aka suicide type of sin.

Add all these new jobs to good, dutiful Jane's current job as a pregnant CPA and you can begin to see why she is beginning to unwind at the ends. When does the world stop for good, dutiful people? When is their job over, and someone else fill in for soul duty?

Yeah, I didn't think you would either, but it never hurt to ask..

Sunday, January 22, 2012

Strangle the Disease

Well, its another Sunday so its my day to post. This last week has been very interesting. I am now on my three month break from work. I had not expected to become pregnant my first round of PGD/IVF so I took some leave to relieve my stress level. Now that I'm going to have the baby I only hope monrning sickness won't distrub me during thiese months.

My husband has come home from his stay in the hospital. Several months ago he had also been hospitalized for pneumonia. That took three stays before it was properly diagnoised and treated. As a consequence I made sure they felt his seizure medication level was stable before releasing him.

It was not so easy. He wasn't home for 24 hours when he had another seizure. I was not happy but he raised his medication dose and has been seizure free since. That has been a relief.

We have another issue that is causing us stress. Paul's primary care doctor was arrested. Not only did the government take all the patient files but they also took the computers. My husband now has to find another primary care physician to take him on. This is hard to do without being able to show a recent medical history. All my husband has are his prescription bottles.

Monday I will be making some calls to see who can fit him in. Its hard when you are dealing with a chronic illness like Huntington's Disease. Many doctor's do not want to see a patient that often for maintance treatment. They want to accept your insurance money monthly and see you once a year for a cold. That's what I liked so much in Paul's former doctor. When the hospital first released him after a twelve hour emergency room visit, Paul's fever spiked. I called the doctor to let him know I would need insurance approval for another visit as my husband's temperature was at 104. Dr. D met us in the hosptial parking lot and he went in with us to make sure Paul was treated properly and not released again.

Yes, I will be making the calls. One of my husband's HD symptoms is a lack of inititive. He doesn't have get up and go. Part of this is from his anxiety. Another part is just the part of his brain that tells us we need to start doing something is now diseased. It is hard to get him to do something, but once he starts there is no stopping him.

Here is another example. I have literally seen him just staring at the computer because the inititive to open up his Kindle to read it is simply not there. He wants to read, he knows the book and page he is on, but he will not open it to start. If I turn it on and place it in his lap he starts reading like a madman. This is because the part of our brain that tells us we need to go from the thought of doing something to actually doing it has been attacked by HD.

So often it is simply easier for me to get up and do what needs to be done. It pains me deeply and I feel as if I'm taking away his independence. At times like this I remind myself I'm not doing it, it is the disease.

This has become worse with his phenobarbital. He simply is too tired to do these things. To make it worse, he is currently to limit his activites and stimulii until we determine what sets off his seizures. He has reintroduced his telephone's web browser, his computer and now the television. He is not to go out to see a movie, enter an establishment that uses florencent lights and many other limitations. I have had to replace our energy saver bulbs with traditional iredencent lights. Somedays I feel as if I have done everything. That is what a full time caregiver does, and I am on that road.

Sometimes it feels as if it will never end. Yesterday I went over to visit my parents. Between working extra hours, the IVF hormones playing games with my emotions, and taking care of Paul I  haven't spent the time with them I would like. So last night we played catch-up. It was wonderful and I didn't leave until 11 at night. When I arrived home my husband as in a very depressed state. I did not feel comfortable with him feeling this way and so I began to talk to him. He told me about an incident his in late teens that still haunts him. Until last night I had not known the details.

After laying next to him (and his laptop) I could not comfortably rest.  I offered to be a lending ear and we talked until three a.m. He asked me for help looking at some information on the internet and I culled through over fifty links on the internet for what I felt was best to introduce this incident. It was only then that I felt safe to sleep.

After a long night at my parents I would have treasured the ability to come home and sleep. That was simply not to be. When this happens I want to take that disease in my little hands and strangle it to death. Make it go away. Bring back the  peace we should have in our home. At the same time, I know I should be thankful for all that HD has not done to him. He can still type on his computer, and talk and eat.

For this time we have together I am eternally grateful.

Tuesday, January 17, 2012

My Name Is Jane

Yesterday I made the decision to take three months off of work. If you know me, you know that my job is part of who I am. My best friend jokes that my husband is books and I am numbers (I am an accountant). This is my first day off and I already miss my calculator. Still I wouldn't get up and go back right now if you paid me double time.

As I write this I'm sittng next to my husband's hospital bed. It isn't fun at all, but this is part of being married to a wonderful man who happens to have Huntington's Disease. I don't like this part of his life, but nobody  promised me a rose garden. 

I have accepted it just as I've accepted the fact his music of choice of Electronica and Trance.

Before my engagement my mother told me I should get out of this relationship before it became too serious. I told her it wasn't an option for me. I've never felt this way toward another human being in my life. For a year my mother didn't talk to me. Then she invited Paul to her home for Christmas. After that, she never brought the subject up again.

Until I met Paul, I couldn't put my finger on people who called their spouse their "better half." Now I understand why.

I wouldn't trade my husband for George Clooney, Oscar and all.

Yes, Paul has angry outbursts and often he's irritable.

Yes. I have to drive him around.

Yes, he'll eventually knock household items over from lack of body control.

Yes, I will have to bathe and shave him.

Yes, I will have to take care of his bodily needs some years ahead.

Yes, he will forget my name.

Yes, he will become immobile.

Yes, I will lose him far to early in our lives.

Yes, his chorea movements will pull his muscles until they hurt.

Yes, I wouldn't trade him for the world.

Yes, I love him more than life itself. When you fall in love with someone that has HD you truely understand what that saying means.  It is no longer just a cutsy Facebook status but a feeling deep in your heart.

It has to be.