Cup Half Full or Empty

Excuse me... Why are you smiling right now? Why are you not standing still? Why are you not crying like I am? Why is the world still moving even though for me it feels as if it stopped?

The night we got the diagnosis I just remember driving home with tears in my eyes, watching the tail lights blow past me. Everything was in slow motion but why were things still moving? I couldn't breathe and I couldn't fathom why everyone else was carrying on like nothing in the world was wrong. The people in the waiting room as we left--why were they still flipping through magazines and talking with one another? Didn't they see us three crying as we entered the room? How was it that life was going on despite my father's death sentence? Doesn't everybody know? Does no one even care?

I called my sister first. The only thing I remember from that call was her saying, "I'm sorry you had to go through that alone." She knew that of the three kids, I'm the basket case. I'm the worst one you want at an appointment like that. I can't hide tears or emotions like my siblings can. I crack under emotional pressure...and this was no exception. Try as I may, I couldn't hold it in. I cried in front of my father when I knew I needed to be strong for him. I failed.

I called my brother next and both he and Lisa Beth said there was no way my dad had ALS. Warren had ALS...not my dad. What my dad had was different. They were seeing ALS first hand at home and this wasn't what it looked like. They demanded we go for a second opinion and told me not to worry. It wasn't ALS. It couldn't be.

I cried retelling the details of the appointment to my then boyfriend, now husband, when I got home. I don't think I made any sense that night. I felt like I was talking in tongues. I couldn't believe what was actually coming out of my mouth. I couldn't believe that Warren wasn't the only person I now knew with ALS. It made it's way into my family? How the hell could that happen?!?!

The next morning I posted a very heated status update on Facebook....something to the effects of "F##k ALS!"  Prior to this blog, Facebook was my outlet. I say anything I'm feeling on there and as my friends will tell you, I don't edit myself and I don't sugar coat things. It drives my husband crazy that I put my life (and his) out there for all to see.

In response to that post, an old high school classmate of mine sent me a private message. Her name is Therese. I haven't seen or spoken to her in years...but that day she sent me a message to not only say that she was sorry for what we were going through, but she also wanted to let me know that she works for an organization called the Les Turner Foundation. Up until that day, I'd never heard of it...but that was going to change.

She described the Les Turner Foundation and what they do. What are the chances that an old high school classmate of mine who I just happened to "friend" on Facebook would be working for an organization that deals with ALS? According to Therese, the Foundation provides resources for ALS patients and their families among many other things. They provide visiting nurses and home equipment that patients need. They provide social workers and have people who come out to assess your home and help you make it safer for the patient. Most amazing part of this organization? It's all free. You don't pay a dime. They become the people you turn to most as you travel along this journey.

Therese put a call in to one of her colleagues and asked that they call me. She said they would be able to tell us where to go from here in regards to getting a second opinion.

I got the call. The woman on the other end of the phone was very sympathetic and very sweet. I explained my father's symptoms and how they had progressed. I told her that we had gotten a diagnosis of ALS from a doctor in Highland Park but that my siblings were certain it wasn't accurate. She suggested I call Jennifer, the head nurse at their clinic at Northwestern University in the city, to make an appointment.

The appointment was made and on December 16, 2009, we made the first of many trips into the city for what is called "Clinic." All three of us children were present for this one. I was sitting on the floor and the room was packed. And then the doctors started coming...

At Clinic, you don't just see one doctor. You see what seems like 100 of them. For every doctor you see, you see 12 of their nurses. It's insane. One walks out and two seconds later another one walks in. You'll typically see your neurologist and one or two of their underlings and nurses, the pulmonologist and their underlings and nurses, a physical therapist, more nurses, an occupational therapist, more nurses, maybe the wheel chair guy and then more nurses. It's a revolving door. You're not just there for 30 minutes. No....you're there for a minimum of 4 hours.

Our neurologist finally entered the room--Dr Driss. Nice woman. I might like her more if I didn't see her as the Grimm Reaper...but she knows her stuff so I smile when I see her. I pretend that I don't secretly hate her and the news she may bring.

She looked at my father's previous EMG results and did some testing of his limbs and such in the room. She sat thinking for a while before she said anything.

According to Dr Driss, you have to meet a certain criteria to be technically diagnosed with ALS, and my father didn't meet all the criteria on the list. She said what we were looking at was Lower Motor Neuron Disease. The quick spark of joy I got from hearing that my dad did not have ALS was quickly extinguished when she explained the nature of the beast we were now dealing with.

Lower Motor Neuron Disease is mostly present in the lower half of the spine, thus leading to the deterioration of the muscles in the lower half of the body. While it's not ALS, it's still a slow, progressive disease....and here's the kicker--it's still fatal. The only difference is this guy moves at a much slower rate than ALS. Whereas an ALS patient dies between 2 and 5 years, someone with Lower Motor Neuron Disease can last up to 10...but usually less.

The neurologist said, "I guess it's how you decide to look at it- is the cup half full or half empty?" Now can I just say how much I HATE that god damn saying. Even before it was used in this context. I hate it. Why? Because I have no idea how I look at it. I don't know if I see it as half full or half empty. I just see a cup with water in it.

So how do I choose to look at it? Well...my cup has cracked. The water has spilled all over the table. The water's everywhere now and there is no f##kin' cup. That's how I see it. My cup sucked and now I need paper towels to clean up the mess it left behind.

Whereas ALS is the big bad wolf, what my dad had was the big bad wolf's younger brother Larry who was just a tad smaller in size and not as much of a public figure like his older brother. But here's the reality, people...they're both f##kin' wolfs! They both eat people! You're still telling me that my father is going to die...just not as quickly as he would with ALS. Yay! Yippie! Great f##kin' news!

We left after an exhausting 4+ hours in that cramped room with no window. It was a quiet car ride home. Everyone was processing the information we had just received. I guess we were busy deciding if our cups were half full or half empty.

Instead of focusing on cups, we should have been paying attention to shoes...because the next shoe was about to drop...and then they just started falling from the sky.