Ch Ch Ch Changes

When you learn someone you love is dying, things change. The way you view the person, the way they behave, the way you act around them, the amount of time you do or do not spend with them, family dynamics, personalities...everything changes. At first they're little, maybe not noticeable... but as time moves on, they become more obvious.

I can only speak for myself here, but things changed for me the minute I heard ALS come out of that doctor's mouth in Highland Park. Regardless of what everyone else said or thought, the word had been said and now it was stuck in my brain. You can't just erase that from your mind.

Even though I had been watching my father's body deteriorate up until that point, mentally I still saw him as that strong man who scared the hell out of me when I was bad as a kid. Now my eyelids were pulled open and I was forced to look at the reality of what was going on. My dad's body was slowly checking out. That strong man who I once feared was now becoming weaker by the day. Change had begun.

The most obvious change at first was my father's body. Up until that point, the biggest indicator that something was wrong was the fact that he was bent forward at a 90 degree angle. Change.

His left leg became weaker and required a brace to help with the drop foot so he wouldn't be as prone to falls. Change.

His right hand--the one that used to spank me when I got out of line as a child--had begun to close up...finger by finger until it was rendered basically useless. Change.

After time, the right leg became weaker and required a brace as well. Soon its strength over the left leg became non existent and the right leg became the weaker of the two. As of today, he has no control over the right leg at all. When being transferred (the term you now use when you move your father from point A to point B) you have to move the leg/foot for him. He can no longer do that himself. Big change.

Where he used to walk on his own, a walker was eventually needed. Change.

Soon, the walker wouldn't cut it anymore and he would have to use a wheelchair full time in order to move any further than from where he was seated to two steps away. Change.

Slowly, the left hand began to close. At first just one finger. Then two. Then three. He had two "good" fingers left on that hand until about 2 weeks ago when one more began to close up shop. More change.

In 2011, a custom made electric wheelchair was ordered and this would be his new form of transportation if downstairs or leaving the house. BIG change.

A special mini van was purchased from Warren's wife Sheri so we could get my father out and about with this new monster wheelchair. Automotive change.

Once his breathing levels had reached a certain point, the doctors at Clinic began pushing for the feeding tube. After fighting it for a LONG time, my dad had the surgery on Valentine's Day 2012. Great way to spend that holiday, huh? Where there once was a stomach of muscles, there now is a stomach with a tube hanging out of it...a tube that will soon serve as his mouth as his ability to swallow becomes more difficult. BIG change. Not well received either.

Where there just used to be mom and dad, there were now caregivers. At first it was just three days a week for a few hours a day. Then it went to 5 days a week...and soon to 12 hours a day, 7 days a week. When we come to visit, it's not just us anymore. There's always an extra body floating around. Invasive change.

Changes took place in the the physical structure of the house as well...the house where I was raised. It started with the building of a ramp in the garage, carried over to a chairlift on the stairs, included grab bars all over the house, taking doors off and re-hinging them to open outwards, commodes scattered about in various rooms, reconfiguring my parents' bedroom to make it more wheelchair accessible, turning what used to be my old bedroom into my father's new man cave...the changes took over the house. Change. Change. Change.
Other changes were harder to see. Those happened inside the mind and are invisible to the outside world. At least some of them are.

I made a conscious choice to spend as much time with my father as I possibly could. I made it a point to bring my children over as much as possible, especially Jackson, so I could say when all is said and done, "My child knew his grandfather and will remember the time spent with him."

I changed the quality of my time spent with my father so I could memorize everything about him...the sound of his voice, the way he rubs his hands, the way he lights up when Jackson walks in the room, the way he chokes up when speaking to Jackson on the phone, the way his watch hangs off his once strong and muscular wrist...I memorize it all, no matter how small and insignificant it may seem to others, and file it away in my head. One day, I'll search for those memories for comfort. One day in the near future, I'll playback everything I observed.

In time, your relationship with your family starts to change. As stress builds, tempers flair. Things are said in the heat of the moment that wouldn't be said had this not become our reality. Personalities change and each is completely opposite from the next. Whereas my siblings seem to be in what comes off as a very angry place, I'm in an extremely sad mental land of my own. Where their voices raise and argue, I cry. They can have serious talks and hold it together where I have to self medicate and often leave the room to pull it together. Sometimes there is resentment and anger and a lot of the time there is frustration and a sense of hopelessness.

The quality of time spent with your loved one changes. Where I used to just visit my parents as Lisa, their youngest daughter, I'm now Lisa, the caregiver, most of the time. Because I live the closest, by default I'm the one who spends the most time there running errands, doing things around the house or caring for my dad. Don't get me wrong...I'm not complaining about it. At least not anymore. I choose to do this. If I'm asked by my parents, I have the ability to say no...I just choose to always say yes because for me, it's what I have to do.

To be completely honest here (because I said I would be and said I wouldn't edit) I used to get pissed that I was always the one having to rearrange my schedule, get a sitter for the kids, pay a disgusting amount of money for that babysitter to stay later hours, take time away from my own family, spend our money on errands or meals on wheels, etc... when to me it seemed like my siblings weren't doing as much. Granted, Jay and Lisa Beth were going through emotional trauma of their own so I understood that, I still felt shafted for a while there. I felt like I had the short end of the stick...but then my perspective changed...

I no longer worried about what my siblings were or were not doing. I realized that each of us are on a journey here and I can only be in control of the path I chose to take. I can't change the paths of my brother or sister. I can sit back and watch them walk but how they chose to walk their path is their decision. When my father is gone, I will know that I did as much as I could, as often as I could. For me, that's all that matters. Knowing I gave him my all will allow me to be at peace when this is over. If I didn't, I would forever have to live with that knowledge and regret...and for me, that would eat me up alive.
I realized that each of us are coping with this in such a different way than the other two. I speak for myself when I say that I began grieving the loss of my father when ALS first was mentioned. The others seemed to respond differently. I became more and more depressed and found myself crying all the time. Anything could and would trigger me. I then realized that I needed personal change. I needed help. I needed drugs (the legal kind, people. Come on!) and I needed therapy. And then I began to change.

Where I used to be weak and fragile, I now found inner strength and courage to walk this path laid out before me. I realized that I was about to suffer the biggest loss of my life and I saw that I needed to make changes in how I behaved, how I saw life in general, how I saw the time spent with my own family and I realized that I needed to let go of the anger. I turned my focus on me and took my eyes off everyone else...well, everyone but my dad.

I began looking at my children differently. Even during the moments where they are driving me crazy, I still search until I find a sparkle of good in them...even if it's teeny tiny...it's there. I changed how I behaved with my kids--trying to be more patient and do more things with them so that when they are older, they look back at our relationship and can remember the small things I did for them. I constantly tell them I love them...there's no way they can doubt that they are loved. I snuggle a bit longer at night with Jackson and I tend to sneak in his room after he falls asleep just to watch the peace on his face as he dreams. I pay attention to the little things...those quiet moments where you actually see the being that you created. It's amazing once you step back and look at things from a different vantage point.
My view of my marriage changedas well. I pictured myself in this same situation years from now and it made me stop taking for granted the time my husband and I spend together. I saw what an amazing man I have...one who bends over backwards for my parents in the same manner that I do, one who understands why I am gone so often, one who never questions the money we spend on my parents, one who just gets it. He gets that this is what I have to do and he doesn't make me feel like s##t for being gone as often as I am. He'll take the kids for an entire weekend if need be and won't complain about it once. He treats my father as he would his own.

This experience has made me love my husband more strongly and has taught me how to communicate better with him. I think that it's actually brought us closer together even though we are physically apart more than ever. I don't take him for granted...and I don't take for granted how blessed we are.
I made a conscious effort to change the time I spent with my father as well. I would still be caregiver Lisa when I needed to...but I also carved out time to be his daughter Lisa as well. I made it a point to come for lunch every Sunday. No caregiving. Just lunch. This is when I am just his daughter and he is just my dad. As hectic as the time usually is because of the baby, I still love this time and look forward to it each week.
The most significant change for me came in how I looked at the world and life in general. I made it a point to not complain about things in front of my father. If he asks, I always say I'm fine...even if there are tears rolling down my face. How dare I complain to a man that is dying from such a disgusting disease? It puts things into perspective really. How bad is my petty bulls##t in comparison to what my father is going through? When I get upset about something, I do a reality check-- I think of him and then I see just how stupid and petty some things really are. I have become more at peace with the rest of my life and the crap being thrown my way...outside of my dad's situation. I'm not sure I'll ever be at peace with that.

Some people aren't good with change. Some changes are good and other just plain suck. Some just have to be and yet others are fixable. Sometimes change is a choice and sometimes it's forced upon you. Sometimes the only thing you can control with change is how you cope with those changes. Sometimes the changes overwhelm you and begin to extinguish that spark of life that you once had...and sometimes changes make you pull up your big girl panties and make you a stronger person. Sometimes change teaches you what you didn't yet know about yourself. Certain changes have endless possibilities in them and others have a clear end planned out in advance. Ya never know what you're gonna get...but ya know you're gonna get something because life is ever- changing.
And while some changes you learn to live with...others are bit harder to accept. The things that we don't want to change tend to be the big ones...like having your father be diagnosed with ALS. That sure wasn't on my list of wants or needs. On the flip side of that, the things we want to change sometimes prove to be the most difficult of them all. Almost impossible.

The one thing I cannot change? Guilt. No matter how hard I try to change, no matter how far I've come and how strong I've become, the guilt is always there. Guilt and sadness. For those, I have yet to find a way to change. But hopefully...change will come.

Hopefully change will come soon. It has to.

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.

D Day...The Day My World Stood Still

Ya know in the movies how after the bomb goes off and the smoke clears you always see someone squinting through the dust to see what's in front of them? That's how I felt after Warren's death. We had spent so long focusing on Warren and his family that we didn't have to pay attention to what was right in front of us the whole time. With him gone, we no longer had that "luxury." Now we had to deal with the reality that we were next.

Life wasn't always like this though...in fact, things were pretty darn good.  It wasn't until 2006 that things started to change.

That year, my dad began having severe sciatica...enough where he ended up in the ER from the pain. An MRI showed nothing major and he was off to physical therapy.

This is one of the last times I remember seeing my dad standing somewhat upright... at my son's 3rd birthday party. It was in 2007 that my father began to hunch forward from the waist up. As days passed, it became more and more difficult for him to stand on his own at all. He saw his primary care physician who sent him back for physical therapy but no change. He went to see my chiropractor. No change. And then the falling began.

After a fall on the ice in December 2008, he seemed to be getting worse. I took him to see my back doctor to see if there was anything he could do. Dr Hudgens was the first to see and diagnose the drop foot which he thought was causing the falls my father was experiencing. Dad began wearing a leg brace on one leg in January 2009 and using a walker to help him get around. He was back in physical therapy but nothing seemed to be helping.

In January of 2009, his primary care physician ran into him in the hospital hallway and noticed severe weight loss. He came in to be seen and had a number of tests run. During one of those tests, they found a growth on his bladder.  In March of 2009, my dad underwent the first of many surgeries for what turned out to be bladder cancer. Who knew that this would be the least of our problems.
Doctor after doctor, no one could tell us why my dad was hunched over at a 90 degree angle. My sister and brother, both physical therapists, began doing research on their own and thought maybe he had a disease called Camptocormia which is related to Parkinsons. We made our first visit to a neurologist who specialized in this area and she ruled out that possibility. She suggested it might be Myopathy and sent us to another neurologist who specialized in that.

At the end of April, my father made a trip to Highland Park Hospital to see Dr Shaw. He suggested my father have an EMG done...which he did. The results showed some deterioration in the muscles but we still didn't have an answer.

We went back to see Dr Shaw on November 17, 2009. It was at this appointment that our lives forever changed. It was D Day...Diagnosis Day. Dr Shaw handed my father a death sentence when he told us he had ALS.

I was with my parents at that appointment. Once the doctor said ALS, the rest became blurred. It was like the teacher in Charlie Brown...I could hear noise but I couldn't make out what was being said. Because of Warren, I knew what this meant so all I heard was my father is going to die.
When we walked out of the office, my father stopped and sat on a concrete slab in front of the elevator. He hung his head for a minute and looked back up at my mother and I. My mom was crying. I was crying. With tears in his eyes and a shaky voice, my father said, "Listen you two... I'm gonna be fine. Ok? I'm gonna be fine. Don't worry about me."

I helped my dad into the car and my mother asked me to call my brother and sister to tell them what had happened. She couldn't muster up the strength to do it. I watched them drive off as I walked to my own car...blurry red tail lights through my tears. It was brisk outside and I remember seeing my breath as my breathing started to change. I got into my own car, slumped over the steering wheel and completely broke down. I cried for a full 5 minutes before I made any movement or picked up my phone to call my siblings to tell them the news.

My dad may have thought he would be fine, but I knew better. These would not be the only tears I would shed. No...this was just the beginning.

Close Your Eyes

When my sister called me, she said, "Ya know, there's no way you can say no, right?" And she was right. How could I tell Lisa and her family that I wouldn't sing at Warren's funeral? It was the absolute last thing I wanted to do but seriously...how could I say no?

Singing was in my past life. I haven't done it for years in a setting like this. Sure, I've sang at funerals before...but not for someone I know like this. Not only was my voice not prepared, but neither was my mind. How was I going to hold it together to sing one note let alone multiple songs? But as usual...my sister conned me into it and I agreed.

Warren's wake was like nothing I've ever seen before. There were balloons and party favors along with lollipops for those who came to say goodbye. Everything had a smiley face on it. Compared to the grief that was in his home the last time I saw him, this room was full of life and energy. It was amazing to behold.

And there was Warren. It was an open casket and his once athletic body laid peacefully with a soft light shining down on him. He looked the same as he did when I saw him last...a shell of a body...but this time there was peace. There was no more suffering, no more agony, no more drugs and breathing episodes. Just peace.

Warren was finally at peace and I think his family was too. No longer would they have to watch him die minute by minute. No longer did they have to take overnight shifts without sleep. No longer did they have to keep track of when he received his last dose of morphine so he could get another dose at the exact right time. Now there was just peace.

The adjoining room was full of pictures and had a video montage running that Lisa and Jay had created. I was fine up until I saw that damn video.

Carla brought me over to watch it and handed me a tissue. My sister-in-law and brother have an amazing gift to link pictures to music and this was their finest piece to date. They broke the pictures up into categories.

During the segment dedicated to his marriage with Sheri, they played Just Breathe by Pearl Jam.

"Stay with me. Let's just breathe."

"I don't wanna hurt. There's so much in this world to make me bleed."

"Did I say that I need you? Did I say that I want you? If I didn't I'm a fool."

During the segment dedicated to his relationship with Janie, his daughter, they played Lullaby (Goodnight, my Angel) by Billy Joel. Here's where I really lost it. It started with a silent video of Janie sleeping on a boat when she was just a little girl...almost as if she were being rocked to sleep by the waves.

"I promised I would never leave you. And you should always know...wherever you may go, no matter where you are, I never will be far away."

"Goodnight, my angel now it's time to dream...and dream how wonderful your life will be. Someday your child may cry and if you sing this lullaby...then in your heart there will always be a part of me."

During the segment dedicated to "little" Warren, they played Father, Son by Peter Gabriel. I think I got up to get a full box of tissues at this point. Seeing a man so proud with his first born son...Jesus.

"I could hold back the tide...with my dad by my side."

"Looking for release from the pain."

"With his dad by his side. Got his dad by his side."

"Can you recall when you took me to school...we couldn't talk much at all. It's been so many years...now these tears...guess I'm still your child."

"With my dad by my side. With my dad by my side. Got my dad by my side...with me."

The rest of the video was a blur to me...mainly because I couldn't see through the tears at this point...but it chronicled his relationships with Lisa, his mom and dad, and his brother Paul who had previously passed away. The video was beautiful and heartbreaking at the same time. I was exhausted when it finally ended.

I caught a glimpse of my dad at one point during the wake. He was looking down at his hands. I can only imagine what thoughts went through his mind. It's one thing to hear about your future...it's a whole other thing to have it thrown in your face like this. There's no escaping the outcome of this disease. One day we would be back in a room like this but one person would be missing...

I pictured myself at my father's wake. I pictured the people that would be there reminiscing about his track years. I tried to imagine myself as calm as Warren's family was. I couldn't do it. I kept asking myself, "How the hell am I going to do this? There's no way."

The next morning I arrived at the funeral parlor to meet my sister. We had to go to the church to practice with the choir guy while everyone else was at the parlor for a ceremony of sorts. I told myself that I had to remove myself from the situation mentally. I had to close my eyes. I couldn't see any crying or grief...I couldn't hear it either. If I did, there'd be no way I could get through those songs.

As I waited for my sister, Warren's family arrived. I stool outside his room and looked in for just a moment. I shouldn't have done that. Sheri was standing in front of the television watching the movie of her husband all alone...until "little" Warren came up behind her and put his arm around her back. I walked away.

When the Warren's family and friends arrived at the church, they waited in the hallway until his body was brought in. I was up in the choir's balcony facing away from the door. I would not look. I stared at my sister until she said it was time to sing.

And we started...just our two voices...nothing else...Amazing Grace. I kept my eyes closed.

As the mass continued on, I kept my fingers in my ears so I couldn't hear what was being said. If I heard ANYTHING, I would crack. I kept my eyes closed until my sister would tell me that I was up.

Ave Maria. Panis Angelicus. How Great Thou Art...I sang as best I could.

The only time my eyes opened during that mass was when I had to sing and I only looked down at my music. The rest of the time with my eyes closed tight and my fingers in my ears, I tried not to think of Warren...and of my dad.

I did it.

Problem was...I never got to say goodbye to Warren. I couldn't grieve his loss because I was either grieving about my father or I was pushing them both out of my mind. I had to drive my mom home so I couldn't cry in the car with her either. I was full of sadness but couldn't get it out. I was suffocating.

Later that night, in what little privacy I have in the bathroom, I grieved the loss of Warren. I said goodbye to him as I finally allowed myself to cry...

And then I opened my eyes.

The View From Where I'm Standing

Have you ever been to a psychic for a reading of your future? I've been once or twice when I was in my 20's. If you haven't, you've at least seen those movies where a witch looks into a crystal ball and can see the future.

From where I was standing, Warren was my crystal ball.

When Warren was first diagnosed with ALS, I had no idea what it was. I knew it had to be bad because everyone was in panic mode but I had no idea what was really about to happen to him and his family.

I remember the first time I noticed something "wrong" with Warren. We were attending his 40th birthday party and his speech was at times difficult to understand. It was slurred and it took a while for his sentences to end. My sister had warned me ahead of time but until you experience it, you have no idea. That was the day I realized that this WAS a big deal.

As time passed, I began learning more and more about this disease from my sister and from Lisa Beth, my sister-in-law. What they were telling me was horrible but at the time, it didn't hit me in the gut. I couldn't see it every day so I had no idea what it looked like...therefore I didn't truly get the magnitude of what this disease is capable of.

As the disease progressed, I'd receive updates from my sister who spent a lot of time with Lisa Beth's family. I watched as my sister-in-law slowly began to change. Her once bright smile was no longer present. She was losing weight quickly and her eyes were heavy, as if she hadn't slept in years. Her grief was beginning to physically manifest itself and no matter how hard she tried, she couldn't hide her sorrow. She was never really "with us" when she was with us. Her mind was always with her brother.

It was during this time that my father was also diagnosed with ALS. I was with him at the doctor's office when it happened. Talk about a hit to the gut. Now the disease that I had seen slowly eating away at Warren's body had also entered my father's body...and here's where the view from where I was standing changed.

Each time I heard something regarding Warren's status, I immediately thought of my father. Each time something broke down on Warren, it showed me what my father's future was going to look like. When I saw Warren and saw the deterioration, it broke my heart not only for his family but for my own as well because this was around the corner for us. When these thoughts entered my head, I'd feel horribly guilty that my thoughts were more on my father than they were with Warren. I still feel bad about that.

From where I was standing, Lisa Beth was my own future. The toll the disease took on her was what I had to look forward to. The weight loss, the lack of joy, the fake smile and the sad eyes...it was all coming at me like a train that has lost its breaks. It was like looking into a crystal ball and seeing your future...and then panicking at what you saw.

I didn't see Warren often during the last year because I gave birth to my second child and his colic was out of control. Leaving the house was not an option for us and mentally, I was spent. The few times I did see him, I would be warned ahead of time by my sister on what to expect...but you're never really prepared for that. The ugliness of the disease cannot be described by words. What it does to the human body is gut-wrenching. Unless you see it first hand, you just can't understand.

The way I looked at Warren's deterioration is different than let's say his friends. While they are grieving the slow decline of a great man and friend, I'm grieving that as well as for my sister-in-law and also for my father. Each time I saw Warren's body, it was like his head popped off and my father's head was there in its place. It was frightening for me.

 I think at some level, I distanced myself from seeing him at the end and I feel like s##t for actually saying that out loud...but there...I said it. I think in my mind, if I didn't see it with my own eyes, maybe it wouldn't become real for us. The reality of the disease was too much for me to take.

At the very end, I left the baby with my husband and made a trip out to see Warren and mainly show support for Lisa Beth, Sheri, Warren Sr. and Marietta. Once again, my sister had warned me about what I was going to see but nothing could prepare me for what my eyes were about to witness.

It was raining heavily that day and there had been a rash of storms the night before. When I pulled up to the house, it was dark and gloomy outside. The inside of the house was dark as well. There was no laughter to be heard. No music or TV until you actually got into Warren's room. When you entered the door of the home, you were hit in the face with sadness. It was all around you...you couldn't escape it.

I had to wait a few minutes to go back and see him because he was enduring one of his horrific breathing episodes where he's basically unable to breath at all. Once the panic had settled, my brother walked me back.

It was everything I could do to not cry when I entered his doorway. The man who was once so handsome and full of life was literally an empty shell of a body...but his soul was still trapped inside. He had his bi-pap on and his breaths were beginning to slow a bit after what he had just went through. The sheet that covered him looked as if it were covering a skeleton's body...because basically, that's all that ALS had left.

I gave Sheri and Lisa Beth a hug and Sheri's sister offered me a seat and asked me to hold his hand. Holding back the tears, I sat down and took Warren's boney hand in mine. It was cold...just a thin layer of flesh covering bones. I watched the rise and fall of his chest and in my mind wondered how long the human body could go on like this.

They had music playing in the background and the TV was on but the volume was turned down. They played Warren's favorite music for him and he was surrounded by pictures of his family. The grief in the room was suffocating. Their heartbreak was contagious...you couldn't escape it.
I cried the whole way home that day...and that's about a 45 minute drive. I'm not talking little tears running down my cheeks either. I'm talking about CRYING...like the kind where you can't breathe  and snot is running down your face. Oprah called it the "Ugly Crying." ( I can't believe I just quoted Oprah because I never watched that show...but the one I did obviously was meant for me to see)

I cried not only because of Warren, but I selfishly cried because somewhere in the near future, I was going to see my father in this state and I wasn't sure that I could handle it. Realistically, my father's body will not hold on as long as Warren's did because of his age...but the deterioration will still happen. It continues to happen every minute of every day. I think perhaps the mental loss of independence and dignity is equally as bad as what the body endures...at least that's how I'm seeing it from where I'm standing.

Sometimes not knowing what the future holds is a good thing. No more psychics for me!

Seeing what's to come is more scary than living it on the fly...at least from where I'm standing it is.

Peachy

When my father was diagnosed with ALS, I had already met the beast so I somewhat had an idea of what we were in for. This is the story of "Peachy"...Warren Peterson.

When my brother first met his wife, I was blown away by her big, bright blue eyes. They were the first thing that caught my attention...that and her killer handshake. (Gotta love a woman who can shake a hand without trepidation) When I learned more about her and her family, I realized that these two were meant for each other. My wacky brother had not only found his soul mate, but he also found a match in both her dad and her brother, Warren.

I remember when my sister and I first saw Warren's picture. We looked at each other and said, "Damn, Lee! Your brother's hot!!" Lisa Beth said, "Yeah, I know."

Warren had eyes like Lisa. (No, I'm not talking in third person...my brother married a gal named Lisa...but we call her Lee or Lisa Beth in order to keep us straight) He was full of life and he was equally as crazy as my brother was. I never thought Jay would find people who got his humor like we did....but he did...and he snatched that gal up and made her his wife.

Lisa's family became an extension of our own. We often celebrated things together and we grieved together when their was a loss in one of the families.

Warren and his wife Sheri have two amazing kids: Janie-whose bright blue eyes can pierce right through you and "little" Warren: the boy I loved talking about Harry Potter to when he was younger. (That kid is so damn smart) From the outside, they seemed to have it all...until the Fall of 2008.

I asked Lisa to recount Warren's battle with ALS and with her permission and the blessing of his family, here is his story...

Around Thanksgiving of 2008, Warren started slurring his speech. It wasn't subtle...anyone could hear it. He also began twitching in his arms, neck and chest.

The first of many doctors to see Warren was his family doctor who then sent him on for a scan of his spine to check for a pinched nerve. When the test results came back negative, Warren blew off his symptoms and went about his business.

At a doctor's visit for his son in early 2009, that same family doctor asked Warren about his symptoms. After hearing that Warren was still experiencing the same symptoms, the doctor sent him off to a neurologist (doctor #2).

With Lisa at his side, Warren went to see the neurologist who did a physical and then suggested he come back for an EMG. At that point, he gave them no indication what might be going on.

In February of 2009, Warren and his crew went back to the neurologist to have the EMG done. Halfway through the test, the doctor stopped and sent them away. He said that Warren needed to go to Loyola to continue the test. Later that same month, their family doctor told them they needed to go to the Mayo clinic to rule out things such as ALS. At the mention of the disease, the family went into panic mode.

In April of 2009, Warren and his family made the journey to Mayo for a week of testing. Warren drove. Even though they were scared, Warren still managed to joke around and make his family laugh. When all the tests were done, there was no conclusive diagnosis but the doctors thought they were dealing with ALS. The doctors at Mayo suggested they go to Northwestern and see Dr Sidique so he could check Warren's symptoms, administer another EMG and do more testing there at the clinic. At the end of that week at Mayo, Warren was unable to drive the group back home. Deterioration had begun.

In July of 2009, Warren and the family went to Northwestern and they pretty much agreed that they were looking at ALS. At this point in time, Warren is still walking and driving. He even enrolls in fall classes at the college.

Fall of 2009, Warren is still driving but he drops his classes mid semester. He sounded intoxicated when he spoke and it became harder and harder for him to speak in class. And then the falling began...another classic symptom of ALS. At this point, Warren's family pretty much starts feeding him as it was difficult for him to hold a utensil, let alone cut food up with one.

That Fall, Warren is still driving but a custom made wheel chair is ordered for him. He is now having difficulty eating and swallowing...Insert feeding tube here.

In early Spring of 2010, the wheel chair arrives and more independence is lost as Warren stops driving and walking. He moves out of his bedroom upstairs and into a room on the main floor of the house.

Easter of 2010, Warren ate his last meal via his mouth at his sister Lisa's house. From that point on, he only does feeding tube feeds. That same Spring, Warren begins to need full time care as he was unable to transfer on his own. At first, his parents, his wife and his sister served as his caregivers but by the Summer of 2010, the family can no longer do it alone and caregivers are brought in. Thus begins the loss of privacy.

Fall of 2010, Warren dresses up as a tank and attends Janie's Halloween party at school. As he entered the hallway, the children parted to let him through. From what I hear, it was an awesome sight to behold.

Around Thanksgiving of 2010, Warren gets pneumonia which is usually fatal for ALS patients. Many patients die once they get it...but not Warren. That guy had 9 lives. He recovered but he now has to wear a bi-pap machine at night when he sleeps. It is around that same time that overnight care is brought in. His wife can no longer do it alone. She works a full time job, is raising two children and up until that point, was caring for her dying husband on top of it all.

Valentine's Day of 2011, Warren goes to Janie's school for her Valentine's Day party. It would be the last time he leaves his home. That same month, Warren goes into hospice care and his pain is unbearable.

By March/April of 2011, Warren is in extraordinary pain. Morphine can't even touch it. Despite the pain and what he's going through, Warren still emails people and is using a specialized computer that is worked by his eyes. He's using the bi-pap almost all day now and breathing has become more difficult.

In May of 2011, Warren is taking unheard of amounts of Morphine and Lorazepam. The difficulty breathing has become more extreme and the family is unable to manage his pain. His wife now works from home instead of leaving the house to go to the office.

Later that month, Warren stops using his computer. The family cannot understand what he wants or needs. Only gibberish is coming out of his computer. As the month continues on, his feedings stopped, as his stomach could no longer tolerate the input. When the shakes when into the tube, they'd come right back up.

That same month, pain medication is administered around the clock, sometimes every 10 minutes. He now requires two caregivers to care for him and his bi-pap doesn't leave his face. Ports are put into his arms and legs and injections are given directly into those ports. Shortly after, the port sites swell and harden.

Hospice is now coming every day, sometimes twice a day. They also come in the middle of the night when they are needed.

By the end of May/ early June, Warren is almost comatose. He will not rouse or awaken though he did have one episode where he was completely coherent and attempted to communicate with his family.

On June 6th, 2011, Lisa (who had been at her brother's side day in and day out) went home after the night shift to take a shower at 8am. At 10:00, Sheri called Lisa to say that Warren was awake. He had just received a sponge bath and he just woke up. His parents, his wife and his sister communicated with him. He seemed with it and indicated that he was not in pain. The family stayed with him and told him loving things.

At 11:00am, everyone left the room except Warren's father and the hospice nurse. Little Warren had come home from a morning shopping trip.

On June 6th, 2011 at a little past 11:00am, with only his father and nurse present, Warren quietly passed away. His body who had fought so hard for so long decided enough was enough...and he was gone. The family came back into the room, including his young son, to say goodbye.

June 6th, 2011 at 3:00pm, Warren's body was taken from his home for the last time and was taken to the funeral home.

Throughout this long battle, I watched as Lisa suffered along with her brother. This disease doesn't just kill the patient...it kills the family as well.

Each time I saw her, Lisa had broken down a little more. The big smile she always had was gone. There was a fake one in its place. She tried to hide her pain but you could see it...plain as day.

On June 6th, 2011, not only did Warren "Peachy" Peterson die, but the sparkle in my sister-in-law's eyes was extinguished as well. That brightness that always shown around her was no longer there. Her heart had broken as a void was now present in her life. For Lisa, Warren represented the voice of reason, a genuine force of strength. He was her safety net and their bond was unusual and partially forged by the previous loss of their brother Paul.

The one thing Lisa Beth wants the world to know about her brother is this: he was her hero and it wasn't just because of the ALS. He NEVER ONCE complained about having or dealing with ALS. Not ever. There may have been inner demons but he held it together for everyone else. His body may have been dying, but he was strong for his family. He remained easy going right up until the end.

The world lost a caring son, a loving husband, a proud father and an extraordinary brother the day Warren passed.

My heart broke for the Peterson family as this disease played out...but my heart was breaking for other reasons as well. Their journey with Warren was seen differently from my eyes. In his passing, I saw my future...and I was scared as hell.

Three Stupid Letters

Growing up, we're taught all kinds of letter combinations: ABC, XYZ, ing, ies, etc...

Once we begin school, we learn how to read and write. Three letter word combinations are a staple in the classroom: Dog, Cat, Yes, Mop, Mat...you get the drift.

In all my schooling though, not once did I encounter what would end up being a 3 letter combo that would forever impact myself and my family. Never once had I thought that combining the letters A, L and S would cause such damage. I mean, it's three stupid letters...what kind of an impact can three little letters make?

To be honest, I had heard of Lou Gehrig's disease but had no idea what it was. I had no clue that it was the same thing as ALS. Why would I? No one I knew had it so it basically didn't exist in my world. I knew all about breast cancer and heart disease because those were common place in my family tree...but ALS? No way.

I had no idea that ALS stood for Amyotrophic lateral sclerosis...I can barely say it let alone know anything about it. I had no idea that those three little letters put together are basically the grand-daddy of all diseases. Now I'm not saying that cancer isn't horrible or that AIDS is a cake walk. I'm saying that now that I know what those three damn letters do to the human body, I'd rather have anything else.

ALS is a neuro muscular disease. It's progressive and there is currently no cure. When you're told you've got ALS, you've been handed a one way ticket for the worst roller coaster ride ever designed and once the ride is over, you exit into the universe on your soul's next great journey...leaving behind a family that is keeled over with nausea because they took the ride along with you.

ALS starts either in the upper or lower motor neurons. That starting point usually has a part to play in how this disease will progress for you...and from what I'm told, you'd rather not have it start up top.

Symptoms vary and everyone presents differently...but the outcome is always the same. After your muscles start to wear down, you slowly begin to lose your independence and your dignity. It seems that once you get used to the body part you just lost function over, a new one springs up the following day. You'll lose the ability to walk, to use your hands, to go to the bathroom by yourself or to shower alone. At a certain point, you'll notice that eating and drinking becomes more difficult as you begin aspirating food when swollowing...Bring on the feeding tube!

Once your ability to eat goes, you'll be fed by a tube that is hanging outside your body while attached to your stomach internally. Depending on where your disease began will probably determine when your ability to speak will end...but that's inevitable too.

Once everything has stopped working except for your lungs and your heart, you are basically a soul stuck in a body that is already dead. You can feel pain. You are aware of your surroundings but you can no longer communicate to those around you. You are feeling your death and your loved ones are left guessing what it is that you need when you try to blink your eyes for help.

Most ALS patients die of respiratory failure or of pneumonia. Basically, you suffocate to death and are fully aware of it...feeling everything. You are captive in your body until your body decides it's time to quit.

Most ALS patients die within 2-5 years of the onset of symptoms. Some die within a year. Some have managed to beat the odds and survive longer. The bottom line is...you're gonna die and it's not gonna be pretty. Not only will you suffer, but so will your family as they watch you leave a little bit each day.

So why the hell would I know anything about those 3 letters? Because those 3 f**kin' letters are currently breaking my heart as they take a little of my father away from me each and every day.

So if I'm living through this right now, how do I know what the end will look like? Because I've seen the face of this devil before. I've seen it take the life of a young, handsome man. I've seen it break down a family. I've seen it take the sparkle out of people's eyes...because before there was ALS in my father, there was Warren...