Daddy's Home

Today is the last day my husband will be working out of town, at least for now. For the last few months we have lived separate lives. He wakes before dark, works 10 hour days on the steel, has beer with the guys and plays dominoes all night in their shared motel room. He eats top ramen and Jack in the Box, a maid makes his bed every morning, and twice a week he makes the 4 hour drive home to see his family. I have no idea where he is at most times, he showed me pictures from a Michael Jackson dance contest he attended the previous week, I didn't know he had gone. I married my husband to share a life with him, and when people ask me where he is I want to say he went to the store, not he is somewhere in Santa Barbara that I would need my GPS to find. When he visits I feel the limitations of his time, he yearns for sleep and I hold myself back, greedy for his attention. I settle for sleeping in his strong arms, his hands a deep dark brown from the sun, his cuticles gnarled and dry, his fingers swollen and at least one broken. He's too heavy and eventually he turns over, leaving me to stare at the outline of his shoulders and drift off pressed against the small of his back. I feel him kiss me good bye at 3am every Monday in the midst of my deepest dreams, and when I finally break through my sleep my heart drops at the darkness of our empty bedroom. The days he's gone are oddly normal, I've grown accustomed to his absence, which may be worse than missing him. When he comes home I jump on him, my legs wrapping tight around his waist and I inhale his scent as his unshaved face scratches my cheeks. He kisses me fiercely every time, but already I feel the clock tick. When he comes home tonight the clock will stop, but I will try my hardest to hold onto that feeling and not take his presence for granted. Our lives will intertwine again as naturally as they have the past 5 years, and maybe the next time I am irritated with him for leaving his clothes allover the floor I will stop for a minute and remember our empty bed, and just be glad his clothes are on our floor and not a motels. Maybe... maybe not...

Paul & his bed buddy Jeff, no more Monkey Bites, he's mine!

Happy 5 Year Anniversary Bebu!!!

For Mom, In Heaven

What does Heaven mean to each of us? A state of mind, a physical place, an ends to a means, an eternal reward... July 22nd was my Mom's birthday, or would have been, how does that go? When a person dies before their time do they still get a birthday? Only those of us left behind experience the date and internalize it along with the list of other moments never to be lived.


When a loved one passes we placate ourselves with children's tales of Angels watching over us, although the Bible specifically lists Angels as uniquely created individual entities, and tells of a sleep to be had by us all between our final breath and the day of Judgement. No mention of magical dead people capable of hearing prayers as demi-Gods. As a non Christian I am free to create my own platitudes, but bristle at the hypocrisy of denying Christ(ianity) while simultaneously subscribing to random New Age mythology. It is religion I avoid, not God, so how do I rectify my spiritual needs without being guilty of writing my own religion?

Religion is a boundary Mankind relies on to enforce the moral restrictions we place on ourselves while meeting our innate need for an understanding of our existence. God must exist because we have a need for Him. Our relationships with God are as necessary and inborn to us as verbal communication. Verbal reasoning is proof of the existence of speech, as theology is proof of God. Just as there are a multitude of languages, each providing the necessary dialogue within its cultural context, there are a myriad of religions, each independently capable of religious satisfaction.

If each of these religions explains Death in it's own way, how are we to know which is correct, and who are any of we to call any of these incorrect? So if we take the religion out of Death we are left with only God, and in most major religions God has a place of existence beyond the physical realms of Earth. While some may be pantheistic there is still a common consensus among many major beliefs that this place, what I can only call Heaven within the confines of my own American cultural context, is the final resting place for those who have lived a decent life. Even the ultimate destination of reincarnation is to attain a level of wisdom as to escape the mortal coil and be released to another plane of existence, and is governed by the nature of our actions.

So we can justify a belief that only the good survive, in at least a metaphysical form, without sacrificing our spiritual independence or subscribing to a dogma that assaults our common sense.

When I ran those 13 foggy miles in San Francisco on Sunday I had scrawled "For Mom in Heaven" in sharpie on my arm. I can still see the remnants of ink stained skin. As I stepped off the Golden Gate bridge, which I had passed under by boat with my Mom as a child, I mentally whispered Happy Birthday Mommy. While I intellectually am aware that my Mom's soul exists somewhere far away, it warmed me to think that somehow, someway, she knew. Regardless of her place in Heaven, I know without a doubt she exists in my heart. As sappy and self gratifying as that belief may be I hold onto it in all the moments my soul aches for hers. I guess that is what makes me human.


(and yes, I originally spelled Heaven wrong and had to fix it, it was 4am and sharpies don't have spellcheck.)

San Francisco Half Marathon!

I'm back! The last week up in North Cali was a wonderful trip. We were able to spend time with my Gramps and Nana, take the kids on the BART to the Exploratorium, and enjoy the clean air and limitless trails surrounding Moraga. I took a solid 8 mile run on Wednesday on a path that cut through fields and huge trees, I felt like a dog finally let off a leash and leaped through the entire run...

Paul drove up from Santa Barbara Friday, and we spent Saturday at the Health expo and walking around the city a bit. My Gramps owned an elevator repair company in SF for years, and as a child I would spend a week or two each year with him. He would take me with him to work, a perk of being the boss, and let me terrorize his secretaries all day with my constant pleas for attention. SF has it's own vibe, as though it exists on a separate wavelength, and I always enjoy a chance to visit. We headed back across the bay to the NF Endurance Team dinner where we were able to break bread with others who have stood up to fight against NF. We all hugged tightly at the end of the night, unsure of if we would find each other amidst the mass of runners the next morning...

4:30 AM, bright and early Sunday morning, I dragged myself out of bed and growled at Paul a bit before shaking off the remnants of a half-nights sleep and lacing up my trusty running shoes. I pulled my black hair into tight pigtails and smeared sunblock on my makeup-free face. Runners don't need makeup. Ok... maybe just a touch of water-proof mascara!

Paul and my Nana had come to support me and we were able to locate some of the team. I crossed the starting line surrounded by bright yellow CTF singlets! I gave my friend Bob a big hug and dropped into pace with Jill and Elise, who had finished half marathons before in 2:08! I planned to stick with them as long I could and then fall back as necessary, I worried their pace would make me burn out early but wanted to get as far ahead as possible... The course was scenic, passing typical tourist spots and running along the bay leading from the Bay Bridge to the Golden Gate. We got up the first small hill inconsequentially and the Golden Gate drew closer. I kept my eyes trained on the ground right in front of me, always worried my balance will cause me to fall. From mile 4.5 to 5.5 was a steady butt-burning incline, I kept taking 10 step walk breaks and then running to catch up. As we reached the top I choked out... no... more... hills!

We ran to the bridge and stared up at the huge towers looming above us, the ground was slippery with fog and the 1 lane course was crowded with excited runners of all ages. A quick clock check told us the hill had set us a few minutes behind schedule for our planned 2:20 finish. We put some pep in our step, dodging around slower runners and squeezing by on the sides. The bridge didn't have mile markers and we lost track of our distance, feeling as though it was the longest.mile.ever! Looking out over the bridge was like running inside of a cloud. We finally ran the entire bridge, over and back, and headed down for the final segment of the race.

We came up on a mile marker sure it was to say 9 miles, only to find I had already run 10 and was right on pace! Right then I saw Paul on the course cheering for me, I ran straight to him, almost knocking us both over with my momentum, and crushed my lips into his before staggering off to catch up with the girls. Paul snapped away with the camera and raised his fists in solidarity. For the first time I truly experienced a runner's high! I was flying, and felt like I could run forever!

Then in the final 2.5 miles, we came upon about 5 steep San Francisco style hills! All I could think of was the beginning of Full House, how the house is on that hill and you wonder how it doesn't all just slide right off. I hiked the first hill and flew down the other side, but by the second hill my high was long gone, and in its place were weights in my feet. It seemed there was not enough air in the entire city to fill my lungs as I forced myself up each hill, I tried to stop but the girls pushed me on, and after a gruesome 20 minutes Jill said we had finished the hills! I could see the finish line and from somewhere within me drew a reserve of power and ran full speed for the end. It was further away than I thought, but I could not imagine walking in after the distance I had already covered. There was no stopping now... I ran full force and as I stepped over the finish I stumbled to an awkward halt and tears threatened my eyes. I cleared them away and checked my stopwatch... 2:18!! I had finished in 2 hours and 18 minutes! I looked at Elise and told her, I think I died on the course and this is a dream! It was hysterical, I was dizzy and everything seemed surreal. Before I knew it Paul had found me and I was eating a banana and wearing my medal. In the midst of the insanity I forgot to take my official finisher's photo!! I can't believe it! But I think this sums up the extent of my experience...

After I peeled myself off the ground we found Nana and met back up with the team at the Finish Line Festival. We cheered on the full marathon finishers and then Nana took us to Sinbad's for cold Heineken, a fat grilled cheese, and a beautiful view of the bay.

Next stop Long Beach FULL marathon with the Nf Endurance Team as Team Captain! Yeah!!!!

Too Blessed to be Stressed...

I did my last treadmill run today in preparation for the San Francisco half-marathon this Sunday! I am really pumped up, and despite my nagging self doubts I am anxious to attack that course. I just want to come in at or under 2:20. That is slow for most people, but I am running my own race. I did just have Cyberknife a month ago!

On my run today I threw in some hills and strides, then did plenty of stretching and core work after. I held hands with both of my kids and soaked up the warm... okay blistering hot.... sunshine as we left the gym. I love the feel of their tiny hands pressed against my palms.

I have a long day of laundry, cleaning and packing today, but am doing it with a smile, because I know tomorrow we leave for a visit with my Gramps and Diana in North Cali. Paul will join us on Friday, and the trip will culminate with the half marathon which I have dedicated to my Mom as her birthday is this week.

I feel blessed and grateful, which may make for a boring blog, but I wouldn't trade my life for anything today.

Gramps and his BFF Dave on a recent "fishing" trip!

Intent

I stepped outside yesterday with the intent of running about 12 hilly miles, and was promptly slapped in the face by 90 degree weather at 6 pm. I started a slow easy jog down a flat shaded path, and just kept going until it was dark, cold, and my left knee started to click. I had covered about 10 miles. Instead of my usual feeling of accomplishment I could only focus on the fact that the flat 10 miles was incredibly difficult for me to finish, yet I want to make a PR on a hilly 13.1 mile course in just 9 days.

The longer I am a runner, and the more articles in Runner's World with women mentioning going a "slow" 8 mile clip that I read, the more I feel the strain of my own limitations rather than the joy of triumph over a difficult course. It is no longer enough for me to just finish, I want to be proud of the time on my watch as I stagger to the finish line.

These feelings of inadequacy have plagued me over the past 2 weeks, and Paul's answer was to tell me that I would probably have a very slow finish time in San Francisco because of the hills and I should prepare mentally for that. I just looked at him and said... you suck at this.

Screw a slow finish time, I am going to PR next Sunday. If I have to trash my legs in the process and spend the following week in an ice bath on oxygen and a diet of sharkees and protein shakes, well that is all the better to remind me the price you pay to reach your goals. I may not reach them as fast as others, but I will reach them.

Sicko

Michael Moore is obviously a master of piecing random videos together to prove his point. I'm a liberal, and this movie was obviously biased even to me. I wasn't nodding along at his assumptions and finger-pointing, I was instead wondering at what point he would provide any real research and hard facts in his "documentary." Driving a bunch of sick 9/11 workers up to Guantanamo Bay and calling over a loudspeaker for health care does not prove anything but his famewhoring ways.

The entire movie tirades against the American healthcare industry, which is obviously as broken as our judicial system. I agree up to that point, and I also agree that the insurance companies see every health procedure as cash out of their money clips. I don't however think France, England, and Canada have these perfect Utopian societies where everyone loves each other and everything is free. (cue "We Are the World")

Yes, France has a national healthcare system and mandated paid vacation time, they also have a 45% payroll tax and a personal income tax rate up to 50% depending on your tax bracket. It's amazing what information Google can provide, I'm sure Michael Moore knows these numbers, but being that they didn't fit his agenda he didn't deign to include those facts. He spends a chunk of the movie asking random Canadians about their healthcare, and of course those random, mostly healthy people, have received adequate care in a timely matter. If he had stopped to ask someone with a chronic condition, such as NF2, he would find that Canada lacks much of the advanced technology we have here in America. Many Canadians have private insurance secondary to the national insurance which they attempt to use here in the States to receive more modern treatments.

I knew before sitting down to this movie that our healthcare system was broken, my own Mother was denied for necessary procedures multiple times by her HMO. I also knew that sometimes, the system works. Last month my neurologist suggested radiation therapy, and I chose to see another neurologist for a second opinion and then treatment at one of the leading medical universities in the country. I did not pay anything out of pocket, and have America to thank for that. Sometimes, our system isn't so bad, and when it works, we get the most advanced technology there is. On the other hand I have a friend Holly, who's medi-caid wont cover an Auditory Brainstem Implant or a promising chemo drug, even though she is already blind and facing complete deafness. (She has been forced to begin saving money for her own treatment, and has written a book which you can purchase in support here.)

So while I will continue to support the idea of Universal Healthcare for all Americans, I am just unsure of how Michael Moore having Cuban firefighters hug crying 9/11 workers has anything to do with that reality.

JTs Annual Neuro Opthalmology Visit!

On Tuesday JT finally saw the neuro opthalmologist at Children's Hospital Los Angeles. It took several months to get him in to be seen by Dr. Borchert, and I was incredibly happy with the exam and information I received.

JT and I drove the hour long trip to Los Angeles on the same day as the Michael Jackson memorial, which of course was only a few miles away from the hospital. I was so worried about traffic, but that turned out to be unecessary. As we drove JT asked me if Michael was a boy or a girl. When I told him he was a boy, he said well then why did he look like a girl? How do I answer that?

So we reached the hospital and JT was a bit tense, he hates having his eyes examined, especially having them dilated. So of course I was tense as well and in full Momma Bear mode. The nurse who took us back profusely apologized for our relatively short wait, everyone was helpful and friendly. They took a full history on JT and communicated with me by typing on a computer in the room.

Dr. Borchert came in after a couple of hours and did not really speak to me until after JT had been examined, dilated, and then examined again. JT seemed to like him, and did not struggle with the drops at all this time! I was so proud of him, he took it like a champ. After the doctor and the residents shadowing him each peered into JTs eyes, he picked up a pen and wrote, and what he wrote in 4 minutes if more information than I have ever gotten in the last 3 years of biannual vision exams JT has had...

In JT's left eye is what appears to be a very small tumor called an astrocytic hamartoma. Dr. Borchert has seen these commonly in his NF2 patients. For now, it is not affecting his vision and is very small. It needs to be monitored as it could potentially grow.

JT has been legally blind in his right eye, possibly since birth. We call it his "bad eye" and he tells me it is broken all the time. Dr. Borchert is the first doctor to tell me he has what is called a combined hamartoma of the retina and RPE (retinal pigment epithelium.) This is incredibly rare, even in NF2. The rarity comes from the involvement of the retina as well as the epithelium from what I understood on Google! If you look closely at the photo in the center of the eye, you will see a large grey mass taking up most of JT's retina. It will stay the same size his entire life and continue to block 80% of his retina as it has since birth.

This seems like a lot of information, but technically it is just details on what I already knew. Neither lesion has grown and JT has adjusted very well to having limited vision.