Glabrous Ride

Tomorrow is my last day of work, yet for the last couple of years, it’s felt like it has been a vacation, of sorts. Maybe not a vacation exactly, more like a detour.

This detour was simple. The turns were clearly marked and I seemed not to realize that I was going in circles, and each circle was getting smaller and smaller until I was standing in place.

I have decided to start moving again, shifting to first gear and letting go of the clutch slowly so as to not stall. I will shift to second, then third, then fourth and if I am lucky, shift to fifth on a fast yellow sports car down a never ending highway, twisting and turning but always going forward.

It is a little scary, this road of unknowns, but standing in place and watching life pass you by is much more frightening and paralyzing. I felt content in inertia as my muscles atrophied and my mind died slowly, but it was a false happiness.

Now, I look forward to the energy and joy that comes with the adrenaline of not knowing what the next turn will bring. All I know is that perpetual motion is best and I’ve got the fuel to get me where my dreams want to take me.

It’s gonna be a glabrous ride...

(word by Marty Barrett)

and on the fifth day there was clarity

A couple of months before I got married, I had an experience that not only changed my life forever, but made it very clear for me that I was making the right decision. Don’t get me wrong. I never doubted that I wanted to marry Erik, but this was sort of a test that made me really search inside myself and make one of the hardest decisions of my life. Whether it was God, if you are a believer, the universe, if you are spiritual, or sheer coincidence, if you are an atheist, it completely shook me to the core of my being.

It started when I went to Mexico for the second time to make all the arrangements for the wedding, which at that time was going to take place in the beautiful town of San Miguel de Allende. I talked to Erik on the phone and he told me he had punched the dresser in his sleep and was worried about it. When I returned, we talked about the incident and he said that he thought his grandfather had died of Huntington’s Disease, but had to ask his parents. I had no idea what Huntington’s was but he said he was going to make an appointment with his doctor that week.

The next day, I typed it up on Google and this is what I found out via Wikipedia:

Huntington’s Disease is a neurodegenerative genetic disorder that affects muscle coordination and leads to cognitive decline and dementia. It typically becomes noticeable in middle age. HD is the most common genetic cause of abnormal involuntary writhing movements called chorea. Symptoms of Huntington's disease commonly become noticeable between the ages of 35 and 44 years, but they can begin at any age from infancy to old age.

It is also incurable.

Suddenly, I felt I was on a quagmire and I was sinking. I was shocked so I kept searching for articles about the disease. I read countless horror stories from the families of victims, of the quick decline into dementia, and how, as the disease was passed on, it got worse and the symptoms appeared at a younger age.

I couldn’t believe it. I sat behind my desk at work in complete despair. I had to leave the office and go to the bathroom to cry.

“How can this be? How can Erik not know the horrors of Huntington’s? How can he not have told me before?” All these thoughts rushed to my head, then came the realization that he must know and I felt terrible.

“How was he feeling? Was he afraid of finding out? Was he more terrified than I?”

I drove home that day in silence. I couldn’t even turn the radio on. All I wanted to do was see him and hug him and kiss him.

When I got home and he was there, cooking dinner, like nothing. “How are you? How was your day?” he asked. All I thought about was his strength and how he must be putting up this happy front for me, so I acted like nothing was happening. I needed to be strong for him.

The next day was the same. I got home and he asked me how I was. I said fine and then very politely and sweetly asked him if he had made an appointment with the doctor. He said he forgot, very matter-of-fact. My heart skipped a beat and I understood that he might be so scared of finding out, that he was putting it off. I changed the subject and tried to make conversation and talk about happy things.

I couldn’t stop researching the disease, I began to think about his family. Was his dad showing signs of dementia? Did his brother have the disease? Were they aware of the level of care they would need in the very near future?

That evening Erik told me he had not made a doctor’s appointment again. I swallowed my anguish and reminded myself to be strong, to smile and to be his rock.

My drive to and from work became a time for thinking, for imagining the worst, for crying, for meditating. At work I was barely functioning and my level of productivity was nonexistent. All I did was read about the disease.

There was an article in the New York Times about a woman who got a DNA test to see if she had the disease at 24, which she did. At that moment she knew she had an expiration date. She sacrificed herself to raise money and awareness for the disease. She fought with her mother who was against her taking the DNA test because it only meant that she had it too. She didn’t date because she didn’t want to fall in love and then have him take care of her in the end. She made arrangements for her ultimate demise into dementia.

The fourth day came and on my way home I thought of this woman and how there was a very real possibility that this was going to be his future and of the very real impossibility of having children. Suddenly I was in a rage. I was so angry at the world, at the universe. Why him? Why me? Why couldn’t we have a normal life, have kids and dogs and cats and grow old like everybody else? Is love like ours not allowed to exist?

I got home and I was a mess. Before he said anything, I asked him if he had made the doctor’s appointment. He said no and that was it. I had had it.

“Please make the appointment with the doctor. Please! Stop torturing me in this way. I have to know!” I yelled at him with tears in my eyes. He looked at me like I was crazy and said that he would, first thing in the morning.

I went to the bathroom and cried some more. He asked me if I was ok, and I said I was fine. I needed to keep it together, I thought, for him, for me.

This went on for five days. I would sit on the couch and stare at him as he watched TV. I wanted to cherish every moment because I knew our time together was limited. When it was obvious it was making Erik uncomfortable, I would stop and just hold his hand. At night, I would stay up watching him breathe, in and out, in and out, rhythmically and beautifully.

After one more unproductive day at the office, on my drive home, I didn’t think of anything. I took the Colorado exit on the I-5 and as it curved I said out loud “Ok God. If this is the way it’s going to be, fine. Let it be. Because I love him, I will accept not having children. I will accept caring for him, and I accept that he will eventually succumb to the disease. I just ask you to give me the knowledge, the strength and the patience I am going to need because this is going to be very hard.”

Then a miracle happened. I got home from work and found him in the kitchen. The first thing he said is that he had made the appointment and that he was going the following week.

I hugged him and kissed him and sat quietly on the couch. I waited a couple of minutes and asked something about his grandfather.

“Does your family ever talk about Huntington’s?” I asked.

“Huntington’s? Why would they talk about that?”

“Didn’t your grandfather die of Huntington’s?”

“No. He either died of Parkinson’s or Hodgkin's. I have to ask my parents. I told you that.”

What???? I realized that I had made a terrible mistake. Somehow I had misheard and combined both Parkinson’s and Hodgkin’s in my head and came up with Huntington’s - a disease I had never heard of.

I didn’t know whether to cry or laugh or bang my head against the wall or what. Five days I thought he was going to die! Not just pass away, die of a horrible disease that takes your mind, your thoughts, your physical abilities, everything. For five days I cried, I yelled, I played out all sorts of scenarios in my mind. For five days I was in total chaos.

And at the end of the fifth day, I realized that I loved Erik so much that I was willing to put myself aside, sacrifice not having children, and take care of him for the rest of his life. I loved him so much, I still wanted to marry him and spend my life with him.

Think of it what you will, but to me, it was a miracle. To me, it had been a test that I passed and in return, I was given clarity and the assurance that what we share is true love.

We laugh about it now. He still thinks I am crazy, but it doesn’t matter. We have a long life ahead of us, together.

(the word 'quagmire' was provided by Jessica Hopkins. Thanks, Jessica!)
(image by Paulina Merekiova)

One Last Weekend with My Brother

This past weekend, two different and separate events reminded me of a moment I shared with my brother before he died.

The first was the visit of my fantastic brother-in-law K. Witnessing the great relationship between brothers made me wonder what my relationship would have been like with my brother if he hadn’t been sick. The second was my friend J talking about how going home for the holidays was not only a time to celebrate, but to also spend time with elderly family members, knowing he might not see again.

A month before my brother died of pulmonary arrest, a complication of muscular dystrophy, I decided to go visit him in El Paso where he lived. It was Easter time, and when I told my mother I was planning on visiting him, she asked me “Why? He’s fine.” I think my parents were in such a state of denial that they didn’t see his condition worsening as time went by. Because I only saw him once a year, his deterioration was very apparent to me.

Throughout the years, my brother’s illness had taken his ability to walk and at this late stage, most of his mobility. He refused to use a wheelchair. Instead he had an office chair with wheels so he could still, somehow, propel himself in his apartment. When I arrived he was in his usual place: in front of his computer, a portal into a world where he could move freely, using only the frail muscles of his hand.

I opened the door and he turned to me and breathed out a quiet “hi” with his deep voice. I think he noticed my sense of shock when I saw him in such a frail and delicate state, because he smiled in a comforting way. I stayed with him all weekend, taking over some of the many things my mom did for him. Cooking, cleaning up the apartment, watching TV and just chatting it up was the easy stuff. The hard stuff was of a more personal nature.

My brother and I are very private and independent people. We hardly ask for help and are very stubborn in our ways. This time, it was different. I bathed him or should I say, he let me bathe him. It was a process that I am sure my mother and his nurse knew very well, but I did not. I think he sensed my hesitation and told me not to worry, he would let me what to do. I wanted both of us to feel comfortable, so I followed his instructions of privacy carefully: when to undress him, how to move him from his chair to the bench in the shower, where to put the towel. I made jokes every once in a while and he seemed to welcome the comic relief. I washed his hair and closed the curtain so he could rinse.

After the shower, I dressed him in his pajamas and noticed how dry his skin was, especially on his feet. I asked him if I could put lotion on his legs and surprisingly, he said yes. I applied the lotion on his atrophied legs until his skin was soft. We talked a little as I got the nail clippers and clipped his toe nails, careful not to tickle him. I brushed his hair when noticed that his eyelids were heavy with sleep. I picked him up from his arm pits and sat him on his bed. He felt so light for a man of his size. I am sure he was at least 6 feet high, if he had been able to stand up right.

“Do you want the light of or off” I asked before I closed the door. “Off,” he said.

The rest of that evening, I thought about my mother. How could a petite woman with a full time job do all this on a daily basis? Every morning she crossed the border to see him, then work, then see him at lunch, then go back to work, then come back, make him dinner, bathe him, put him to bed and drive back across the border to make dinner for my father. I also couldn't help but think about how her routine would undoubtedly change in the very near future.

My brother passed away a month after my visit.

I think of those last days we spent together as his gift to me. By being completely vulnerable and allowing me to help him in such an intimate way, I was able to show him how much I loved him and to see how much he loved me. In a way, this feeling eases the guilt that I feel for not doing more for him, at least a little, sometimes.

Once I Was Lost in Downtown LA

It was the winter of 2006. I lived with my fabulous friends J and A in a wonderful little townhouse in Park La Brea and I did not own a car. Not owning a car in Los Angeles is like being trapped in a cage in a dark corner of a candy store prevented from enjoying the delightful Silverlakes, fun Echo Parks and beachy Santa Monicas.

My life didn’t stop, however. When I needed groceries I hitched a ride with A. With all its smelliness and grit, public transportation was there to take me to work. Walking down from Hollywood Boulevard to Third Street on Fairfax was a delight in the crisp, Los Angeles evenings.

For the most part, it was bearable.

One day, I received an invitation from my good friend M and his wife to watch a movie at their apartment in Glendale. Asking for a ride was (and is) not in my nature. To get from Park La Brea to Glendale using public transportation was going to be a challenge, but I knew I could do it. I replied with a vibrant YES and a promise to bring muffins. LA was not going to stop me.

I went to the MTA website and planned my route. “Only 2 buses,” I thought. “This is going to be easy.”

So, I walked a couple of blocks to Whole Foods, bought the muffins and made my way to the bus stop. The Third Street bus heading to Downtown LA was already there. No problem at all. From my comfy window seat I could see the sun starting to go down, down and finally disappear altogether. The gorgeous lights of the skyscrapers were like stars to me. When I arrived downtown, it was dark.

I exited the bus where I was supposed to and walked to the corner for my connection bus: Destination Glendale. The sign listed what seemed like 15 different buses that stopped there, but not mine. I must have the wrong corner, I thought. So I walked across the street trying so hard not to look like I was lost, like I had no idea where I was going, like I was way over my head trying this thing. Nothing.

One bus stopped and I asked the driver if he knew where I could catch the bus I needed. He said he never heard of it as he shut the door and left me there. Downtown. At night. Lost.

I was not going to give up. I walked a couple of blocks pretending I knew where I was going, never going on the same side of the street twice. Suddenly, I found myself in a small, dark street. I couldn’t turn back now or everyone would know I was lost. A man was walking towards me. I couldn’t see his face, but I wrapped that plastic bag with the muffins tight around my wrist and prepared to defend myself to the end. He just walked by.

When I reached the end of the dark street I realized that I was right in the middle of Skid Row. I made a conscious decision to walk with resolve and purpose, to hide my fear and keep looking forward. Armed with organic flour and earth friendly blueberry muffins, I walked past the tents, the cardboard shelters and the homeless people. The smell of liquor, filth and insanity filled the air.

Anger started to overtake me. I was angry at myself, at the impotence I felt in not being able to be fully independent and go to a party across town because I didn’t have a car. I was angry for being stubborn, for my hard-headedness in not asking for help. I had put myself in a dangerous situation unnecessarily. Blind with anger, I remember feeling sorry for any bastard who crossed me at that moment because I would have beaten him senseless with my muffin bag. I didn’t care.

I turned the corner and briskly walked back to the streets with the lights and the people. At that very moment, I realized how incredibly lucky I was to be me and how incredibly stupid it was to be there.

I tried one more time to ask a bus driver how to get to Glendale. He was nicer and told me he didn’t really know if I could get to Glendale from where I was at all. With that, I found the Third St. bus heading west and made my way back home, muffins and all.

LA had won. I am not invincible.

(image by Jessica Franco)

True Story

About four years ago, I used to work in a building on the corner of Hollywood and Highland, one of the most crowded intersections of Los Angeles. Tourists from all over the world cross that intersection from Ripley’s Believe It or Not Museum to the Grauman's Chinese Theatre amidst the angry locals and fake super heroes.

On the north east corner, there is a bus stop where hundreds of people board and de-board the bus at all hours of the day and most of the evening into night. I had to walk by this bus stop every morning and evening to and from work.

One hot morning, I noticed an older man sitting on the bus stop bench, resting his arm on the armrest. I only noticed, because he was wearing tight leather pants and a black leather jacket, and thought to myself “that man must be crazy wearing leather in this weather. Ha ha ha! That rhymed. I am a riot.”

That evening, on my way back home, I saw that the man was still there, in the same position on the same bench, which also happens to be in front of a busy Chinese restaurant. I didn’t really think much of it. After all, Hollywood is full of crazies.

The next morning, he was there again. Same position. Same bench. Same hot leather jacket. This time I walked by a little slower, paying closer attention to the man, but I just continued on my way.

All day I thought about the man. Why was he there? What was he doing? Wasn’t he hot?

Finally 5:30 rolled around and I made my way to the parking lot. He was still there.

I walked past him, thought about it for a second, and stopped. I slowly made my way back to the bench, past people walking, some waiting for the bus, others taking pictures. As I came closer, I noticed that his listless hand had turned a deep purple. I looked up at his face, wrinkled and tanned, and realized he was dead. Dead on that bench for 2 days and nobody had noticed. He might have been dead for longer than that. I cannot say for sure.

I called the police and reported the dead man. The ambulance arrived and stopped rush hour traffic on a Friday. I remember it was a Friday because as I walked away I could see the frustrated and angry faces of all those drivers wondering what all the commotion was all about.

True Story.

(image by Jessica Franco)

red rhino

Schematic