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.
Over this Spring, my wife and our family are going home to Sheffield. It will be an experience as it always is. For as many years as I have lived in Santa Barbara, I'll always be a Sheffield boy at heart.
The Human League- "Blind Youth"
What you see in this video is literally where I grew up. From the concrete jungle mixed with buildings hundreds of years old to the almost cold feeling that conveys to the musical sounds that came from my childhood era Sheffield is very unique. In fact, this video literally makes me homesick for the better days of my life.
Some cities are simply more unique than others. I currently live in the American Rivera and it is as unique as well. If not such a contrast, I don't think I'd be here for so many years.
Godley and Creme-"Cry"
The main reason behind my trip is that my little sister tested positive for Huntington's Disease. Its time for big brother to step up to the plate.
Another reason for this trip on Spring Break is to take our oldest children to see where their father is laid to rest in North Ireland. Yes, after a year it is time for us to visit the Belfast Child.
Simple Minds-"Belfast Child"
His mother will be coming along for the journey, having chosen to remain here in the States to help raise her grandchildren. This trip will be a sort of homecoming. For Corrine, for my children, and for me.
U2 - "A Sort of Homecoming"
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First, my wife Jane and I wanted to announce the birth of our child, David Daniel Ware.
That's right, "Baby Ware" was born on 27 September 2012
John Denver-"Follow Me"
It was our good friends Stella and Jan over at HDTrainwreck who broke the news to the blogsphere. To two very good friends of ours, great scoop!
So in some of the worst taste I've ever exhibited here (especially considering how much Jane dislikes not only their music but local Martin L. Gore in particular):
Depeche Mode-"Black Celebration (Live at Wembley 1986)"
A few quick notes:
We had a friend who was homeless for two
and a half months. She now is sharing a house with two other sober
women. Who says good people are always punished? I'm so happy as her new
home is much nicer than her old one where she was being emotionally
abused.
In the meantime we saw the best of humanity come out. Jane took her out to have her hair done and helped spend some girl time with her. Another friend helped her keep her telephone service. Finally, a male acquaintance took her out to shop for some clothing to make her feel better about herself. Several other friends donated their living rooms, floors and any other space while she waited to get into the shelter. She even spent a couple days in our crowded house, not minding that every time one of us breathed we nearly kicked her we were so overflowed.
Bananarama - "Na Na Hey Hey Kiss Him Goodbye"
So you may be wondering why I disappeared for so long. It has everything and nothing to do with Huntington's Disease. Like many people with HD, I am a creature of habit. Between the move, my sister's gene positive HD test result, David's birth, Dan's move into our home for a short period of time and the lack of internet for a couple of weeks, my habits were basically broken into five easy pieces. It is taking me all this time to start to get back into my old habits. Even now, it has taken me three days before I got enough written to even post my first video here.
Elton John-"Circle of Life"
This song is a shout out to Dahy's mother Corrine who has relocated from Belfast to help Jane in her last months of pregnancy. She was so happy to have had the chance to see her grandson DJ sing in his recital. It went off without a hitch in spite of his large cheering section.
Its great to be back, now if I can keep in the habit of coming here on a regular basis I will be happy.
Catch Paul Ware on Facebook or Twitter. I can also be reached via email (delete no spam) but much prefer the Facebook message option. The comments section is fine too.
Want to know when the next blog is coming out or recommend it to a friend? There is an easy Facebook page for that now.
For two weeks my laptop is in the shop. The canister is used by the twins so I'm a bit uncomfortable using that for my personal writings. The problem is Blogger's mobile platform doesn't allow me to place embedded music videos so its going to be text for a while.
First, my friends Stella and Jan of HDTrainwreck are in my thoughts. Jan is having a bit of a crisis of Faith with all the destruction HD is causing around her. Both her sister and Father are suffering from this disease.
Jan went to the Las Vegas HD Convention this year on scholarship. Stella also applied but did not receive one.
I've been asked if I am going. A resounding NO! Perhaps it was seeing my mother suffer before killing herself. Perhaps it was seeing my grandfather succumb to the final stages of the disease, but I know where I'm going. Simply put I don't want to be around it anymore.
This isn't new to me, I considered going to a support group once. Just the idea gave me nightmares for a month. I think it's great for some people, I'm just not one of them.
Stella is still battling her depression. In terms of dealing with soft symptoms I feel like she's my soul sister. I was in the hospital for them myself last week. It stated innocuously enough. I was on Twitter and suddenly couldn't manage some basic functions. My brain was confusing the private message or DM function with the open communication mention function. Even after using the basic software almost daily for months my brain functioning simply forgot the difference. This caused my frustration and depression, all HD related, to skyrocket. Before I knew it, I was running around the block trying to get all these pent up feelings out. It didn't work.
So back to the hospital I went. Med adjustment time, again.
There went our vacation to Belfast. Corrine Kelly, our twins paternal grandmother, flew out to spend time with her two grandchildren from her late son , Dahy "David" Kelly. A friend of ours Dan G., and former co -worker of Dahy's, came up to help Jane and me while I was at hospital.
The poor man was served with divorce papers his third day here. Jane and I have opened our house to Dan but unlike Dahy, he doesn't like to commute to Los Angeles daily for work. I can't say I blame him. So after his work break he drove down to start on a new project. We're hoping we can convince him to come up on the weekends. We can always use an extra pair of hands and it must be better than sleeping in a hotel. Besides, we have better company, weather, and beaches than LA. His kids have playmates in the twins. We even have live fruit trees in our backyard. Oranges, apples, figs, tangerines, and lemons among others. What's there not to like?
This is my life the last couple of weeks. Thanks for stopping by to read.
"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"
misplacing my phone because I forgot where I put it down
making typos because my fingers are shaking and not noticing them when I proofread
having to put a book down because I can't keep the thoughts past two sentences
being unable to express my love to my wife
curling up from fear and anxiety
knocking my glass of juice over
realizing when my mother committed suicide she wasn't as insane as we'd always believed
jumping a mile when my mobile vibrates
crying at the drop of a hat
wondering halfway through a movie "how did I get to this point in the plot?"
not knowing what letter comes after "L" in the word halfway
relying on others to get to people, places and things
using cliches because they are easier to remember than thinking of the next word of a thought.
I'm tired of...
Huntington's Disease
~~~~
Catch Paul Ware on Facebook or Twitter. I can also be reached via email (delete no spam) but much prefer the Facebook message option. The comments section is fine too.
Want to know when the next blog is coming out or recommend it to a friend? There is an easy Facebook page for that now.
The heat wave has extended to today. In fact, its actually warmer today currently at 77 degrees. Yesterday both Jane and I were in horrible moods from it so today we are remaining inside in the coldest part of the house.
Talking Heads-"Burning Down Te House"
Its three in the morning and our house is filled with laughter. My wife found a really funny radio host who is going on about Michelle Duaggar. Despite the heat, there has been so much laughter in our house tonight. Jane took a nap, she gets tired easily right now, and then when we woke up its just a bunch of fun. First I watched the Charlie Sheen Roast simply to enjoy something where I can't think.
Here comes today's Double Feature-Thomas Dolby
Thomas Dolby-"Hyperactive(12")"
I'm really noticing a difference when I don't take my Namenda. When I don't take it, I can barely read. Someone asked a few days ago if I noticed a difference. At that time I said I didn't know. After missing a day I can say that I really do notice a positive change.
Thomas Dolby-"She Blinded Me With Science"
Since I'm not able to read well and this heats puts me in such an awful mood I decided to watch the dumbest comedy I could find. That would be Charlie Sheen's Roast which is available on Netflix streaming. I surprised myself by laughing through most of it.
One thing about Huntington's is it can make your emotions basic and in your face. I was very irritated earlier today, and that often turns into anger. That's why I turned on that show. I can't make my mood, but once its there I can do things like watch that show to try and mute it or even switch it to a more positive mood.
Harry Nillsson-"Everybody's Talking (full movie version)"
As someone with HD, I now have mild chorea. It can become visible when I'm walking if I'm having a bad day. Then everybody is either looking at me or turning their eyes to avoid me. I hate that.
My symptoms haven't been getting any worse but lately I've just been feeling like I'm a burden on others. Even things that are part of my normal life are now affected by HD. From having to shave with an electric razor to cutting up my food so I don't choke I really am feeling the reminder of my eventual death in nearly everything I do.
the best part of Star Wars:
John Williams-"Star Wars Theme"
When I get this introspective my wife reminds me that I'm still independent and that she loves me the way I am. Still at times I don't feel like I'm the same human being as the normal healthy people around e. I feel separate and different.
Orchestral Manoeuvres In The Dark-"If You Leave"
Sometimes I feel so lousy lately that the only thing that makes me look to the future is our baby. My therapist says its not depression but introspection. She said that I'm finally facing my HD head on, and not hiding and pretending its better than it is. She said that alone can not only cause the introspection but acceptance.
Simple Minds-"Alive and Kicking"
She talked about the steps of dealing with death. According to my therapist I'm going through these five steps, and by accepting my death I'm also accepting my illness. According to her I've been in denial for many years. I don't know if I did stay in denial all that time but I do know I'm learning a lot about myself any illness from the point of view inside my brain. This is an interesting theory, and I can see how she got me here. Its so weird to accepting what is wrong with me instead of pretending it doesn't exist and all is well.
Another one I played was "oh, I had X symptom but it really isn't that bad". Now I am working on just being able to admit it and go on.
Sparks-"No.1 Song in Heaven"
Another point that I'm realizing is that by accepting my death I'm also accepting my life. Now I can see Jane's pregnancy is such a gift. Its something that I look forward to. Now I have the mental junk out of the way so I spend time thinking about my future. I can sit down and really enjoy something just for the sake of enjoying it. It doesn't have to have any other reason to be done, but my action is just there for the sake of it. If I'm listening to music maybe, just maybe, it can be for the simple fact I find enjoyment in it. There doesn't have to be a higher meaning.
So here we go, I'm choosing this song because when I hear it I think of my life. From my birth until my death its the long way home-I'm here for the journey, and I am letting go to enjoy every minute.
SuperTramp-"Long Way Home"
I'm going to get some sleep, and I hope we continue to cross paths on this journey.
Catch Paul Ware on Facebook or Twitter. I can also be reached via email (delete no spam) but much prefer the Facebook message option. The comments section is fine too.
Want to know when the next blog is coming out or recommend it to a friend? There is an easy Facebook page for that now.
First, don't bring up the Sheffield United loss to Charlton. We don't discuss that in my house.
Lately I have been up most nights, and getting a few hours of sleep in the early morning. I'm averaging five hours a day and am dragging all the time.
Depeche Mode-"What's Your Name?"
Being a fan of the Beach Boys and Jan & Dean
I really love the way Vince Clarke
captured that carefree vibe and vocals.
I think this is due my lack of activity. There just isn't that much that interests me which I can do right now. For example, I generally go to the shopping centre several times a week. Its nearby and I can pick up a few items and bring them home. I also need to go out to buy my smokes. I purposely only purchase a pack at a time so that I am forced out of the house, if it were, by my nicotine addiction.
Human League-"Path of Least Resistance"
This title speaks for itself.
Currently I can't enter stores. They use florescent lighting and those are known seizure triggers. Until I can safely reintroduce them to my life the stores are out. Until three days ago all back-lit devices were out. That included my telephone and all of the apps that were installed on it. It included both my original mp3 player and my Droid. All music had to be played via my laptop, which had been introduced to me the day of my last seizure. Two days ago I got back my Kindle. As you know that is the only device I can read with for any period of time if I want to understand what I'm reading. Oh, and yesterday I got the TV back.
U2--"Ultraviolet (Live in Sheffield)"
But the thing is this. even when I want to go shopping at ten in the evening and cant get my groceries there is still a lot I can do. So why am I focusing on the negative?
The reason I'm doing this is two fold. First, the negative is much more visible for its the most obvious right now. I WAS just denied a trip to the store. I was NOT just given a game of chess on the computer, knitting in front of the home theare setup I installed the speakers for last night, listening to the entire Human League and Depeche Mode catalogs or sitting at the computer blogging. So of course I'm going to be more focused on the negative. The second reason is that since I have a tendency towards depression, I'm more focused om the negative. It just makes things mentally easier.
Johnny Mercer & The Pied Pipers-"Ac-Cent-Tchu-Ate The Positive"
To this day when I think of Johnny Mercer my brain goes back to "Midnight in the Garden of Good and Evil", one of the best books I have ever read (quite enjoyed the motion picture as well). If I could only recommend one book this would be near the top of that list.
Yesterday I was listening to Radio Sheffield and they had an hour of country music on. So on that note today's double feature is going to be Johnny Cash.
Johnny Cash-"God's Gonna Cut You Down"
This video always seems to get mixed
reviews. Its still one of my all time faves though.
Johnny Cash-"I Won't Back Down"
This is one of my Anti-HD theme songs.
Guess what Huntington's Disease?
I won't back down.
Whenever I play Cash, its like Depeche Mode, almost impossible to pick just two. If you are one of the few not familar with Johnny Cash I highly recommend you put his name into YouTube and give yourself at least an hour of uninterrupted time to enjoy this American legend.
Waylon Jennings & Willie Nelson-"Mama's Don't Let Your Babies Grow Up To Be Cowboys"
This song brings back so many memories. It was released when I was about 8
and played on the radio. My Mum used to sing it around our home.
I always think of her when I hear this song, even though for a period
of time, I lived always moving around.
Human League-"Life On My Own"
Perhaps simply because my life is concentrated on what I can't do right now, this song is moving me more emotionally than it usually does. I'm also homesick. I really need to get to Sheffield. I find myself calling Peter, my brother, more than usual as well as looking at videos that feature the city.
Just a few days ago I was talking with @OccupySheffield and a friend about the interesting way Sheffield is a concrete jungle while still having historical buildings. Here is an example, featuring the old Salvation Army Citadel.
Photo from @OccupySheffield
To the left you see a building in total contrast
to the Citadel. I love this area of the city.
That is one reason I love the Blind Youth video so much and feature it here probably more than any other. I should have known how homesick I was when I had a dream about the building featured in this video a few months ago.
If you remember at one point I was planning to visit but then life took a turn, with a marriage and planned ceremony. Soon thereafter my wife became pregnant. I still need to visit, and we are making tentative plans to fly in a week before our wedding ceremony and spend some time with my nieces and nephews. Then we'll all fly to California together.
Human League-"Interface"
More photos of Sheffield
Since I'm obviously in the mood to post multiple videos by various artists today here are the Pet Shop Boys, and as this plays I'll get back to discussing Sheffield.
Pet Shop Boys-"Always On My Mind"
If I had my way, I'd be on a flight next week. Its just not an option for me. My wife hasn't been feeling well, having a bout of morning sickness the last few days. Although I do seem to be drain on her I just can't see getting up and leaving. No matter what, my first obligation is to her right now.
Pet Shop Boys-"West End Girls (Dance Mix)"
This is very different from the standard we are used
to hearing, give it a try and see what you think.
While I was writing this I got a call from my shrink. It seems my test results are in. I'm more that a bit nervous as the last time I was tested it was so stressful. I haven't told Jane yet and don't know if I will until its time for me to leave. He's going to fit me in at 12:30 during his lunch. Its so hard waiting. I'm going to leave this open blog post open until I return.
Speaking of testing, my sister has decided to go ahead and test. Once I find out the date she will be getting the results I'll be flying out to London for the day to be with her as I had promised. I don't want her to feel alone if she receives a positive result. I want her to have someone with her so she knows there is life after a positive result. If she has a negative one, I want to be there to take her out for a celebratory dinner.
[update=
Tears for Fears-"Shout"
I just returned from the doctors. My test results including the Southern Blot came back. It appears this lab also had my strain read too high, but unlike the first test they automatically sent it out for the blot. My CAG came back at 52. Its much higher than I had hoped but considering the age when I first began to show serious psychiatric symptoms it shouldn't come as much of a surprise. For those interested in the CAG age range, here is a chart.
CAG Repeat to Mean Onset Age
Thank you all for continuing on this journey with me. ~Paul]
Catch Paul Ware on Facebook or Twitter. I can also be reached via email (delete no spam) but much prefer the Facebook message option. The comments section is fine too.
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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.
Today has been filed with ups and downs. I must say the ups are worth the downs.
I'm still drowsy and dopey from the phenobarbital but the side effects are wearing down. I only took one nap today and stayed up later than I expected although I'm very tired.
Eurythmics-"Here Comes The Rain Again"
My wife says I've been quiet lately and I have been. For the first time in my life I don't feel like like a man who has Huntington's Disease, but instead feel like "that Huntington's Disease man.". Its one of those little word games we don't really think about until it effects us.
I truly feel like my body is betraying me. As I told my psychiatrist I don't feel like I own it anymore, but have it on lease.
Talking Heads-"Wild Wild Life"
After spending some time on Twitter and enjoying the new box I purchased for the telly that lets us view streaming content such as Hulu Plus and Netflix, I put on Frankie Goes To Hollywood and jumped in the shower to get rid of the last of hospital smell. Somewhere between Welcome to The Pleasuredome
Frankie Goes To Hollywood-"Welcome to The Pleasuredome"
And Ferry Cross The Mersey
Frankie Goes To Hollywood-"Ferry Cross The Mesey"
I had a seizure. Right there in the shower. I must have fallen against one of the walls for Jane heard it and came in from the kitchen where she was cooking dinner.
Julian Lennon-"Too Late For Goodbyes"
I was okay, not even a bump on the head but all I remember of the hours beforehand was the music. It reminded me of the fact that music appreciation is the one thing a person with Huntington's Disease does not lose.
The Human League-"Blind Youth"
I've had this song stuck in my head since yesterday evening. This reply to Johnny Rotten's remark that The League is just "Trendy Hippies" has been replaying in my mind to the point I found myself walking to the rhythm of it. Its a good think I didn't have the Peel Sessions version in my head or I'd be running everywhere.
Another side effect of this medication is double vision, for example I see four hands in the screen capture above. I am having to rely on my touch typing as I can't view to keyboard or the lines on the screen. This time of night everything is double. I even see two Jane's next to me.
I'm trying to eat but its hard to aim the sandwich in my mouth. I wonder how blind people do it?
U2-"Stay Away (Faraway So Close)"
This has been my theme song lately. The closer Jane gets to me the more I find myself pushing her away. It hurts so badly. I know that part of it is I'm uncomfortable with her taking the care-taking role. Its hard seeing her in two totally different positions. For example, when I had the seizure in the shower I w as half bathed. Now somehow I had to get the shampoo out of my hair and soap off the left side of my body. After letting her rinse me off (I was in no condition to do this) how can I then go and see her as my lover? Its a very hard transition, yet one at least now I'm able to make.
U2-"A Sort of Homecoming"
I know the time will come when something will cross that line and I will no longer be able to make the transition. That makes me sad. To do that will be to deny part of her personality.
U2-"Some Days Are Better Than Others"
So despite all of this today I actually spent the several hours celebrating. Jane was notified today by the clinic that she her pregnancy test came back positive! Of course, we had to make all the obligatory telephone calls to relatives before we settled down to celebrate.
Kool and The Gang-"Celebration"
Then it was Viagra time.
Robert Plant-"In The Mood"
Catch Paul Ware on Facebook or Twitter. I can also be reached via email (delete no spam) but much prefer the Facebook message option. The comments section is fine too.
Want to know when the next blog is coming out or recommend it to a friend? There is an easy Facebook page for that now.
