The life of a man suffering from Huntington's Disease, a genetic and fatal illness. Every child of a HD parent has a 50 % chance of suffering from this fatal degenerative neurological illness.
This is the story of one such person.
I hope this isn't too choppy. Its taken several days to write this as my internet time is extremely limited until I get the hell outta here Monday.
The Bangles-"Maniac Monday"
My wife has decided that we will take in David's children. So baby will make five in September. Our family is growing by leaps and bounds. Its enjoyable to watch from the sidelines but it will be interesting once I get home. So much for the single man who didn't want children who started this blog last year. Sasha and DJ are seven years old and so adorable. Yes, I said those kids are adorable. Do you rake me over the coals now or later?
Peter, Paul and Mary-"Puff, The Magic Dragon"
This morning my wife called my Huntington's Disease doctor all the way from North Ireland where she's visiting David's mother. She is having a enjoyable and needed trip. I'm so glad she went.
This is for my wife, who's currently in love with Night of The Proms.
Simple Minds - "Belfast Child"
After this call they put me on Klonapin. It's helping my hands from bouncing off the keyboard all the time. They took me off the Xanax when I came in. They took me off everything and then played around until they found drugs they think are working. They're doing something right because I don't have the crazy need to listen to the Depeche Mode's Black Celebration album all the time.
Yes, I was literally living through thoughts that dark. It should have been a warning sign to me. Instead of looking out out for myself with all these flags I just went about my daily business while I had this album on constantly.
Depeche Mode-"Black Celebration"
Is it any amazement that I drank after ten years of sobriety? I lost my best friend who died literally in my arms with his beautiful children at his feet, I didn't reach out to my wife since she was also grieving, causing us to begin to heal separately instead of doing this important act together. Then my depression kicked in, instead of treating I let myself fall into the black hole. I let myself stay there. I didn't do the things I know would help me get out of it. Instead of focusing on my recovery and sobriety I let myself focus on all the pitfalls in my life and my program. Once I start nitpicking my recovery message, that is a sign my thinking isn't quite right.
Human League-"(Keep Feeling) Fascination"
I am finally starting to feel better over all of this. I'm learning that I don't need to live constantly in a state of bereavement. Life does go on and its time for me to accept that and live it. David would not want me holed up in a room drinking and using. I know this because he didn't want that for himself.
There is a saying in the program that it is basically one alcoholic/addict helping another. When I lost David, I lost a major lifeline to my sobriety. Instead of doing what I should have, like raising my meeting attendance, I did the opposite and started isolating.
Eminem - "Not Afraid"
Well, its time to wrap up so I can have enough time to get this posted to my Facebook. Thank you for continuing to follow me on this journey known as my life.
Hi all. I have 15 minutes online today and I chose to spend it with you. Aren't you the lucky ones LOL ;) I just wanted everyone to know I'm alright. I'm coming home on the 2nd but you can write me at my email paulworre@nospam.gmail.com and I check that twice a day now.
Life is treating me well, and my plans are to be back on the 2nd of April. Thank you all for your thoughts and prayers.
When working at the College library many moons ago, professors would oftten put a copy of required material on loan so that students' wouldn't have to buy a whole book to study at school or buy a book for a single piece of poetry.
This is how I came across Langston Hughes.
Mr. Hughes was an African American poet. That by itself meant he was not widely read. He was read by me however. The professor dropped off a piece titled "Mother to Son" and I read it on my break.
The poem is as follows:
Well, son, I'll tell you: Life for me ain't been no crystal stair. It's had tacks in it, And splinters, And boards torn up, And places with no carpet on the floor -- Bare. But all the time I'se been a-climbin' on, And reachin' landin's, And turnin' corners, And sometimes goin' in the dark Where there ain't been no light. So boy, don't you turn back. Don't you set down on the steps 'Cause you finds it's kinder hard. Don't you fall now -- For I'se still goin', honey, I'se still climbin', And life for me ain't been no crystal stair.
It was a nice poem, soft and well written so I made a xerox of it where I stored it until I had forgotten I even had the thing. Then one day Dahy Kelly, a fine Northern Irishman from Belfast, entered my life.
Dahy didn't need to know this poem, he had lived it most of his life. A child of Catholic parents, growing up as a member of the minority of the people who inhabited his country, Northern Ireland, Dahy spoke a different language (Gaelic), and considered himself a separate unrecognized citizen which even had its own paramilitary force (The Provos). By the time Dahy was about eight years old the first of the hunger strikers, Bobby Sands, had died. Over 100,000 people attended his funeral mass alone.
Political leaders on both sides of the conflict died. Military and political groups would change agendas and sometimes even names. In single years 500 people would be killed, the majority civilians.
When Jane first met Dahy, she could not believe what he told her. This simply doesn't happen in the western world. We are talking about a country that shared two borders with the Republic of Ireland and near to England, not a Middle Eastern country in a faraway land as Lebanon.
So one day he brought her a small simple pamphlet (Dahy and I may have been friends but we didn't share the same hobbies). This pamphlet he felt would explain to Jane exactly what life was like where he grew up. It was titled "They Kill Children, Don't They?" and it documented with photographic illustrations the results of the so-called peaceful rubber bullets the British soldiers would use to disperse small crowds of children and teenagers. You read me correctly, it had photos of dead kids, killed by the British Army in power.
The world lost Dahy at the end of last week from Acquired Immune Deficiency Syndrome, surrounded by his family. He was 38 years old, a loving husband and father of two beautiful 7 year old twins, one boy and one girl (they had their birthday the 3rd of March).
In lieu of flowers, Dahy asked for the money you would have spent on flowers, not a penny more or less, to be donated to a charity of your choice. If you do not have a specific charity in mind, please consider
In addition, a brief visit to see if you are eligible to give another the gift of life through stem cell transplantation was also requested. This free and painless test can be ordered at http://marrow.org/Join/Join_the_Registry.aspx
Finally, before you judge a fellow man, ask yourself if you have climbed up the crystal or wooden stairs? For someone once told me the wooden ones are made up of torn boards and have tacks. They aren't a place where you can sit down while you take a break from living your life.
Hello, This is Jane Ware. You may reach me at jane.s.rudd@nospamGMAIL.com
Don't forget to delete nospam though or I will not receive your message.
Paul recently returned to the hospital. He is NOT in a life threatening condition at this time. Simply put, too many things fell on his plate at the same time. As soon as he is feeling better he is eager to get his emotions out through his love of music. This may be several weeks but do not worry.
If his condition worsens, I will also update this blog.
After this post however, i will be signing in under my blog account so there should not be confusion.
Thoughts, prayers and positive light for him, our child, and me would of course be appreciated.
Jane R. Ware
P.S. His last post was here but not published. I will be publishing it in a few minutes as i know the subject matter was very important to him. I ask you to please read it. JW
Today there is going to more music than text. I am at the point where I'm at a loss for words. Hard to belief but yes, its true.
Depeche Mode-"Personal Jesus"
Although not the biggest fan of this song myself (I think underrated songs like "Clean" get overlooked), this version is very unique with strong American Blues roots. I wish I had found this before today.
Blood, Sweat & Tears-"And When I Die (Live)"
Late last evening we drove up to the Valley to stay with Dave's family for a few days. Although there are always snafus when being forced to settle an estate, this one has become extremely complicated in a short period of time. Items such as the car, which were willed to Ms. K in a community property estate, has an odd contract which is meant to prevent the original owner from reselling at a markup. Consequence is the manufacturer may have first right to purchase the car back since she was not on the deed (for liability reasons).
"I've got AIDS, You've got Huntington's. That means one thing, buddy. ROAD TRIP!"
Yes, my friend Dave said it in those exact terms.
Heaven 17-"Geisha Boys and Temple Girls"
Our road trips had taken on almost epic status. Both of us had grown up without proper coping techniques for life. We had used anything and everything to escape. For that last years of our lives, that included rental cars and any highway that would have us (What, you think he'd take his beloved Lexis on a road trip, where would we fit our food?).
The Eagles-"Hotel California"
My head grew heavy and my sight grew dim
I had to stop for the night
There she stood in the doorway;
I heard the mission bell
And I was thinking to myself,
'this could be heaven or this could be hell'
Over the years we drove all the way down and then up the Pacific Coast Highway (aka Highway 1). On the way we stopped over to stay at the beautiful Hotel California, Palm Springs, simply because we already knew the one in Santa Barbara and wanted to compare notes over the infamous lyrics of the song of the same name. I wouldn't miss this hotel if you have never been. I've already booked a room for March 1st of next year.
Rent Motion Picture Soundtrack-"No Day Like Today"
Then there was the trip through the Texas Panhandle. This was probably our craziest road trip of all. Dave and I had never been to Texas, and we were undergoing a lot of personal stress. His twins had just been born, he had tested positive for AIDS, and my neurologist had made an early diagnosis of Huntington's Disease based on soft symptoms. In addition, I had just purchased a home with my girlfriend at the time. We needed to get away through a safe outlet, and we knew the best time was now before we both ended up escaping in a self-destructive way.
We were lucky. We had lovers who understood that as long as took care of our responsibilities it was a healthy outlet that would strengthen our home relationships more than if we ended up using and drinking.
So off to Texas we went, just because we could. We took an AA meeting guide and called Central Office in each town we reached. We managed to fit in a different meeting each day while on the road. It is very true when you read that the more you go, the more the meetings stay the same. The only difference was the accents of the people who welcomed us as visitors to their kind towns. We attended meetings on Indian Reservations, in the middle of the sticks, and even one where the majority of people were military members in uniform.
Counting Crows - "Big Yellow Taxi"
Of all the things that will stay with me on these road trips is the music. Dave worked in music studios as a career and he could explain why certain music sounded the way it did. Most importantly, he taught me that good music knows when to be quiet. Well, just like life.
Depeche Mode-"Master and Servant"
Take this song for example (it was one of several we discussed to death while our spouse's eyes glazed over). In the beginning there is this complete silence in between each of the three men's vocals. Only then does it even introduce musical instruments in the form of the emulator and then a synthesizer to add to the lead vocals. Dave thought this is where the multitude of remixes failed on this song. They took what made this song unique and turned it into just another generic remix by removing the build up.
Is it any wonder now that these road trips with their resulting discussions were just as mentally helpful to our wives as to us? You see, this was just the tip of the iceberg. We would then list and name half a dozen of the remixes and then debate the failures and possibilities of each of them.
Pet Shop Boys-"West End Girls (12" Dance Remix)"
This is another song that fails as a remix because the important buildup is destroyed as soon as the first note comes out of your stereo system. We would have our windows wide open and be singing to the PSB as naturally as most men sang to Eminem. No wonder we got so many strange looks in states like Alabama.
Speaking of road trips, we had just planned on driving up the coast to Washington State later in March while he was in between contracts. I think I'm going to pass and just watch something on the travel channel. Road trips aren't fun alone, and somehow I don't see Jane rocking it out to the Pet Shop Boy's "Always On My Mind"
I'll tell you why Baby's crying/cuz' she's dying arent we all".
So here we are still at the medical facility. Sitting and waiting, and waiting to sit. Things calm down just long enough where sleep comes and then someone in the room will shift and everyone wakes up. Once we were able to bring in a xerox of Dahy's driving licence to compare the signature against his advance directive things changed drastically. Unused machines were physically removed in some cases, for larger pieces they were simply moved. I have learned more about "no pressures" and "DNI's" than I ever thought possible.
I've learned how easy it is to have a chemically induced cardiac event and how truly painful they can be. I've learned some doctor's fear giving medications out on the slim chance the resulting cardiac condition will be aggravated, or that medications we take daily like decongestants raise the blood pressure. That last lesson I learned after he vomited twice after coughing so strongly, yet still refusing the morphine. The doctor finally called in a steroid so he could sleep. He felt the other medication options would increase his risk of a heart attack exponentially.
I've learned that for some people it is instinctual to avoid medications and when they no longer do is the time you worry. I learned that lesson tonight when for the first time Dahy didn't try to move away from the morphine injection when the evening nurse told him what was in it. That was the first time I cried.
The Cars-"Drive"
Tonight I've learned that even six year children will love unconditionally when they can't be loved back. I've learned there is such a thing as too much silence, and I need to keep my computer or telephone mp3 plugged in simply to get some sleep. Otherwise, every time Dahy misses a breathe I waken. And tonight he's been missing a lot of breathes and that's when they are strong enough to see or hear.
Depeche Mode-"Enjoy The Silence"
All I ever wanted, all I ever needed
Is here in my arms
Words are very unnecessary
They can only do harm
Words are spoken to be broken
Feelings are intense, words are trivial
Pleasures remain, so does their pain
Words are meaningless and forgettable
Billy Idol-"Eyes Without a Face"
Dahy taught me that male bonding isn't just those wild road trips like the one we made from Santa Barbara to Dallas because we wanted to be able to say we'd been to Texas (no other reason) but it was also the laughter of trying to prove, and succeeding, at making 12 step meetings everyday by calling ahead to Central Office just like they taught us to do. Its the promises we made to each other while in the car, that we thought we'd never have to cash in on, because we really weren't that sick. Male bonding is being there and fulfilling those promises because that's what real friends do.
On our road trips we'd listen to Billy Idol or whatever other crazy tune would come on the radio. We did it just because we could. For those trips we were two little boys on the road. We'd stopped growing at too early an age and this was our time to safely indulge that inner child. Our extent of planning these trips was picking out a destination, throwing clothes into a suitcase the night before, and then grabbing breakfast and lunch at the mini-mart. We were wild, and we were crazy. Actually we both still are.
Godly and Creme-"Cry"
This is the first time in my life that Jane hasn't been able to comfort me. She doesn't know what I'm going through because our relationship was so strange. I've been thinking of a photograph Dahy has on his Facebook, it was taken in January of this year, actually on the road when we drove partway on the PCH to judge the distance for a business trip. After a horrible holiday from his health he had a temporary feeding tube placed in so he could gain some weight back. After a lot of consultation his medical team agreed and he pumped it full of everything he could at the highest dose. So in this photo he's leaning over, his glasses hanging out of his T-Shirt neck and he looked healthier than he had in several years. and that infectious smile of his says there is nothing at all was wrong and we were having an inside joke. In fact, after our rental car broke, we were waiting for a new one but in the meantime he had snuck into the break room where he discovered a NiHi soda machine. He was in heaven.The entire time we were out spending precious time at the dealership he was as happy as a child who had just discovered pirates gold.
I don't have access to download the photo but I may ask his wife for one as it brings back so many memories to me. Off to listen to music very low and then to get that sleep. I can tell by his breathing appears to an have decreased to an shallow breathes with an uneven pattern most likely I'll to be aware of this after all.
Yesterday morning I had a visit to my doctor to remove one of two chest tubes from my pneumonia. By the time I was home I was so exhausted I couldn't walk to the mailbox. Yet an hour later my wife and I were in a rental car on our way to Culver City.
This was just the beginning on an extremely stressful day. It appears that sometime around the middle of the night Saturday, Dahy had been released from medical detox. It must have been amicable as he left with what appears to be a prorated check from the facility. From there, he managed to enter another town without his vehicle (which was still in the original parking place when Jane and I found it yesterday night.) He deposited the check, made a sizable withdrawal at a busy ATM location and from there disappeared.
U2 featuring Johnny Cash-"The Wanderer"
Sometime within the next 48 hours he was received and admitted as a John Doe into a major medical facility outside of Los Angeles. He was not able to speak not think independently. Since he had no identification on him, the hospital did not know he was a hospice patient and he was placed in the ICU. (Some of his identifying information including his wallet (minus the cash), watch and wedding ring were located by Jane inside the Lexus. Our thinking is that Dahy thought it was safer there than wherever he went himself.) Once admitted to the facility was suffering from a few separate medical conditions including the pneumonia he had transferred to me. Yes, it had attacked his ravaged immune system again.
Joni Mitchell-"Circle Games"
Then the next evening a nurse came in that knew him from a previous lifetime ago. Specifically she recognized his face and tattoos (yes, your mother warned you to be careful what you put on your body-it does follow you for the rest of you life). To be exact she remembered small facial scar and a tattoo that had among other choice letters included the full F word. She managed an early morning call at his former employer in the Los Angeles area who as it happened had purchased the company he currently was working for on a contractual basis. They called Ms. K and notified her of her husband's positive location. Once she had determined it was him, she called Jane and I. With the twins, it would not make sense for her to come down to the area to drive him home. Against my better judgement, I agreed we would pick up Dahy and the Lexis. Big mistake.
