(Continued from Backstory II: Leading up to the diagonsis)

“Memory is the great deceiver. Perhaps there are some individuals whose memories act like tape recordings, daily records of their lives complete in every detail, but I am not one of them. My memory is a patchwork of occurrences, of discontinuous events roughly sewn together: The parts I do remember, I remember precisely, whilst other sections seemed to have vanished completely.” Murder Mysteries: Neil Gaiman

While thinking about the past 6 months I struggled to form a cohesive story out of what happened. Many details of significance were cut due to them being too painful to explore or merely I couldn’t pull them together into the written form. My memory just wouldn’t allow it. Also, Ulrike’s version of what happened was also very different from my own. I was shocked at the variability of our two perspectives as we discussed this last week. So, what’s described below doesn’t remotely capture the sadness, the pain, or all that happened. So to the reader, or to those close to me who I may have left out, I apologize.

Now, where were we….

Ulrike and I were sitting in the typical medical room that we all know. Cold, sterile, fluorescent lighting giving off a low hum, two uncomfortable chairs, a stool for the docs, cotton balls and swabs in glass jars, the BP cuff, the table covered in paper, a few medical procedural reminders taped haphazardly to the walls, and magazines that were 2 or 3 months out of date…Ya, you know the room. As I told you before, the neurologist came in, sat down and said, “You have Bulbar ALS.”

I was totally blank…Huh? Excuse me? What did she say? Did she say I have ALS? Did I hear that right? No, she didn’t. She couldn’t have…Emotion started kicking in. My jaw tightened. My lip started to tremble. “She’s wrong” I thought. “No way. This isn’t happening. I’m 34 years old. I have a baby at home. No, not me.” I wasn’t prepared; not for this. Instinctively I reached out and grabbed Ulrike’s hand. She was trembling too.. For about 10 long seconds, we held our composure the best we could. I bit my lip, my eyes began to water, reaching down for the only hope I had left I asked with a quivering jaw “how confident was the diagnosis?” But, I’m a realist. I knew the answer ahead of time. A doctor doesn’t tell someone they’re going to die unless they are absolutely sure. She said she was 99% sure. She encouraged me to begin to get my affairs into order and should consider going onto permanent disability to maximize my remaining time. This washed over me. It was pure shock and awe.. I thought to myself: “This is it. My number’s been called. This was how I was going to die. Now I know.” A wave of emotion caught up to me. Ulrike began to sob. I turned to her and cried; She hugged me and we cried together. I tried to stop but I couldn’t hold back that flood of raw fear, disappointment, anxiety, humiliation, and utter sadness of what was happening to me. To us. To the entire family. The doctor quietly left the office and we continued to cry. After about 10 minutes we both found ourselves staring at nothing. Then, Ulrike started to talk about hope. She had regrouped. She wiped away her tears and started pacing around the room. Somehow, and I don’t know how she did it, she reached down, and suppressed the sadness and selflessly started working to lift me up. Her face lit up with hope. She was talking about new studies and recent medical progress. Her confidence was infectious. In that moment she was absolutely sure that I’ll be a boundary case and beat this thing. That, maybe there’s a chance for remission. She had me convinced that hope is alive and well. Now, looking back I realize that she carried me in that moment. It was her strength that got me through the hardest hour of my life and I am forever grateful.

As days moved on Ulrike had done a thorough assessment of the disease and now knew that statistically I had 2 to 5 years. The doctors were (understandably) reluctant to put a realistic timeframe on my progression but that wasn’t going to stop Ulrike; she had a thirst for real medical data and she wanted answers and she wasn’t going to take no for an answer. She had learned that there was a drug out there, Rilutek, for ALS patients. She insisted that the doctor prescribe this to me, our insurance covered it, and “god damn it I was going to take it”. Her words not mine. So as any good husband does I did what my wife said and I started taking the damn pill.

The second opinion, on December 6th, confirmed the diagnosis. I had Bulbar ALS. We learned from the specialist, a regional ALS honcho, that every ALS patient has a unique progression. In my case, my variety started with the speech\swallowing muscles and was descending down my body. He couldn’t speculate on the prognosis until it advanced. Apparently that is the only way doctors can chart ALS patients. Plot the symptoms and draw a descending linear line. So, all we had were the averages: 2 to 5 years for Bulbar.

As we rolled through December 2008 our family paid a heavy emotional toll. By now, Ulrike and I had broken the news to our family which naturally devastated them. It was rough. Rough on all of us. We had both bad days when we’d cry and good days when we’d cry less. For me, sleeping was the hardest to cope with. At night, when the house is quiet and the only thing I could do was lie there and think, the demons would come. Thoughts about not being there for Jonas, thoughts about what life will be like for him to grow up without his father. That moment when he asks Ulrike about me and how hard that conversation will be. The guilt for putting this burden onto Ulrike and our family. My impending death, saying good bye, the loss of physicality and the eventual humiliation around not being able to wipe my own ass. Yes, that is a big one for me to deal with. An internal regression overtook me and I struggled going through the daily motions. I was trying to follow the most common suggestion of “enjoy the moment.” But how do you do that when the end of your life is looming over your head…How do you tune out the sadness, the lost dreams and happily appreciate a tree, a lake, or a cup of morning coffee? A few folks were concerned about my demeanor and mentioned that I should consider an anti-depressant. I refused. In fact, this just angered me. I was, and still am, sad. I’m not biochemically off base. I’m not depressed. I’m dying for Christ’s sake.

As the days ticked by my fate began to settle in. Deep down I was coming around. I hadn’t learned to “accept” my disease but I did realize that denying it won’t help me either. Beneath the layers of sadness I knew I had to keep going. I realized that time was precious and I have a limited amount of it. So either I can wallow in self pity or keep moving forward. So I did. I moved on. I made a conscientious choice to move forward. Just keep stepping. I went back to work which served as a nice distraction. And at this point, physically, I didn’t feel that bad. A bit tired at times, and I’ve always need a nap, but mostly pretty normal. I also knew that I had a responsibility to keep working. We aren’t wealthy and I couldn’t quit or run away. I had a wife and baby who needed me and the bills had to be paid. So, at this point, we did everything we could to resume the normal life that we knew.

As Christmas approached the ALS started to progress. The fasciculations (twitching) spread across my chest and now I felt them down into my forearms and hands. Occasionally, of all places, my ass. I was struggling with swallowing I was taking a regimented series of pills. Vitamin E, CO Enzyme Q10, Multi vitamins, and the Rilutek which seriously wore me out and made my lips numb. It gave me a post Novocain pins and needles feeling after a shot at the dentists. This in turn caused me to spontaneously drool, spit or really sound hammered. Which coincidentally I was some of the time…At night, I started to feel weakness in my hands which was concerning. But, life goes on and the days kept ticking by.

After new years my symptoms seemed to dramatically increase. Speech was worse, strength\dexterity in my hands worsened, energy levels were tanking and by the end of the day I had to sleep. I had no choice. Ulrike and I were worried so we went back into the ALS specialist. He confirmed that I’ve progressed pretty fast in that month. Gee surprise surprise. The prognosis now changed from 2 to 5 years to maybe 2 to 3 years…There was no elegance to my reaction..I simply thought, “this sucks”. On the way home Ulrike and I knew what had to be done. Without a long, drawn out discussion we decided that I had to leave work. Personally, I just couldn’t do it anymore. It was taking a toll that I couldn’t afford. The conversations, the challenges, the meetings, and the petty politics were too much. It was time to focus on what matters. Family, friends and finding peace. I went to work that Monday and put in my two weeks’ notice and never once have looked back. January 19 was my last day at Microsoft.

Suddenly being at home was not as easy as I thought. It took some adjustment for us. The normal routine that gave us comfort was gone and no matter how hard we tried we were struggled to get along. Physically, the side effects (fatigue) of the Rilutek were really impacting our life. As I said before I was tired. It was a deep down exhaustion that was still there even after a full night’s sleep. Ulrike called the doctor’s office to see what could be done. The prescribed Provigil to me which is a drug they give narcoleptics to take away that sleepy feeling. This helped. I had a moderate boost from this but mentally I felt like a hostage to the medical routine. Plus, I had to remain vigilant about when I ate since the Rilutek had to be taken on an empty stomach every 12 hours. My schedule was 3pm and 3am. Now those who know me would understand why I wouldn’t do well with this sort of thing. For those who don’t know me it’s important for you to know that I’m guy who likes to control my own fate. I’ve always enjoyed my independence so this sort of routine really took a toll on my mental fortitude. Plus, I like to eat and an empty stomach is somewhat distressing.

Time moved on and I endured. Ulrike endured and those around me rallied to my cause. My family flew up from LA, Ulrike’s family flew in from St Louis and my friends all jumped in to ensure that I was doing ok. But, I wasn’t. I put on my best happy face and kept moving forward. But, the ALS wasn’t done progressing. I started to feel it in my legs. Specifically my hamstrings and quads. They were tightening up and I started falling. I slipped on the stairs. Bang! Man down! On the throw rugs; Slam! Nose dive. Coming down stairs. Thump! Thump! Thump! My poor twitchy ass. And worse of all, even while putting on my undies. Imagine me, buck naked, undies on one leg and then me tumbling over in grand fall. These weren’t small trips but full swan lake-esque productions that Baryshnikov would admire. I would fly across the room and slam onto the wall or dresser all accompanied by a great deal of pain. But, I believe the embarrassment was worse. Imagine Ulrike flying in seeing me naked, spread eagle on the ground, and underwear still on one leg. I tell you what, this is humiliating for a guy who once upon a time had a small amount of athleticism.

As I was saying…my legs were now impacted which naturally made things worse, by mid March I was done. At about the same time Ulrike had found a promising, open ALS trial in Phoenix and lined everything up for me. I was in. All I had to do was stay on the Rilutek and fly to Phoenix for the workup and meds. Now, it’s important to note that ALS trials are questionable at best. Pharmaceutical companies are not developing new drugs for ALS. There’s no money in it so researchers are trying to use existing drugs with hope that they impact the ALS patient. For example, a while ago lithium was all the rage due to a published study out of Europe and PALS, people with ALS, were itching to enlist in the U.S. trials. Well, as it turns out the success of the first trial couldn’t be repeated and for some folks, it made the progression escalate. For me, I was tired of the meds and decided I was done. My life is my own to control so I stopped taking everything. This was the best thing I could’ve done. In the next few weeks I physically felt better. The fatigue wasn’t gone but it diminished. I no longer felt tired in my bones; if that makes any sense. My mouth and lips returned to normal. Emotionally I was happy and once again, after a very dark time I felt like I had a piece of my life back.

Very recently I began to write. One of the first pieces I wrote was to my son about a place where I found peace in Missoula Montana. A place that’s not grand or majestic but a simple embankment, overlooking the Bitterroot River. A place where I used to routinely visit. A place where I felt totally and utterly happy and at rest. Writing about this memory helped me remember the calm, the solitude, the simple beauty of western Montana and it is this memory that has allowed me to once again re-ignite the feeling within that attaining peace is possible. I don’t know what has changed in me. Maybe it’s some sense that my life is my own and the ALS doesn’t define me. Somehow, very recently I’ve found some peace and joy. Maybe it’s a finer sense of appreciation. Maybe I’m able to understand the beauty of something simple. Now, when I the feel the touch of my wife’s hand, the infectious laugh of a 15 month old, or the moments of connection while having a beer with friends, I can enjoy the solace in those moments and know to hang onto those moments for as long as possible. Those are the defining moments in my life. Experiencing those to the fullest is all that matters. I know now to hold them in my heart and with all my strength remember how truly wonderful, rare, and fleeting these moments are. I realize that it’s the here and now, during the daily nuances of life, where all along I’ve missed the hidden beauty of life by taking them for granted. It’s these moments that are filled with the peace I’ve been seeking all along.