A Year Ago Today

Dear Friends & Family,

It was one year ago today that I “googled” Curt’s symptoms and learned of Amyotrophic Lateral Sclerosis also known as Lou Gehrig’s Disease. His symptoms perfectly matched the symptoms listed under ALS. Curt had mentioned to me a few times that along with muscle twitching, and weakness in his left hand he seemed to be tripping over small things like the edge of the carpet. Would you believe that the ALS website states as a symptom - tripping over or catching a foot on the edge of carpet? Those were the words that convinced me that he had ALS. Word for word. Although he had most of the symptoms on the list, that one was so specific. I had heard of Lou Gehrig’s Disease in passing but had no idea what it was or that it carried a death sentence. I assumed it was a treatable disease.

Anyway, Curt had just left on a four day motorcycle trip the day I self diagnosed him with Lou Gehrig ‘s. That is when the pit in my stomach began. I was home alone with the kids, pretending that all was ok; meanwhile my mind was going in a million different directions full of “what ifs” and “how comes”. When not taking care of the kids, I would sneak to the computer and research the Disease. I read and read and read and cried and cried and cried. I read stories of people fighting the Disease. There were photos of a 40 year old man who was running marathons and within a year of his diagnosis was in a wheelchair. I thought to myself he is not Curt; Curt is strong and coordinated. Curt will not let his body break down. Curt is a fighter, he can fight this disease like no other.

The next day the kids & I drove to Valencia to my friend Michelle’s house for a party. I remember the drive clearly; sunny day, country music on XM radio, and 3 quiet kids. For some reason no one talked the entire way. I was fighting the tears back, thankful that my sunglasses would hide what was trying to pour out of my eyes. Those darn country songs just kept playing and all I could think of was - this is how it is going to be. Just me and the kids.

Michelle & I grew up together so we are close to each other's families. Everyone was asking where Curt was. Somehow, we all ended up on the patio by the pool in a circle talking about Curt. One by one they would tell their favorite “Curt” story about motorcycles or what a daredevil he is. It was surreal to me, I felt like he was gone and we were memorializing him. Of course no one had any idea that there was anything wrong with Curt. It was cool for the kids to hear every one's stories about their dad. I sat there dying inside with the pit in my stomach.

I was thankful for the darkness that filled the car on the way home. The kids were sleepy and didn’t notice my silent tears. Once we were home and they were in bed, I cried the entire night. I am usually a very sensible person and would wait for a diagnosis from the Doctor, but the “tripping over the carpet” phrase had me completely convinced. I kept my thoughts to myself for weeks until we were in the Neurologist’s office; I finally had to ask him “could this be Lou Gehrig’s Disease?” Curt looked at me and asked “what’s Lou Gehrig’s Disease?” The doctor said it was too soon to tell. I broke down on the way home from the Doctor’s office and told Curt what Lou Gehrig’s was and what I had been holding in. He had figured something bad was happening to his body, but had no idea.

We got home from the doctor; Clarissa was on her way out the door, Cayden was on the couch recovering from knee surgery the day before, Corbin needed something and friends were calling wanting to get together for dinner. Life was moving fast, we had no time to think about it, worry about it or be sad about it. That was a year ago.

Today, a year later....Curt still trips over the carpet, spends most of his time in a wheelchair (you can’t fight this Disease), and I know more about Lou Gehrig’s Disease than any other disease. Life is still moving fast and we still choose not to worry about it or be sad about it (as much as possible). And best of all we still have friends calling to get together for dinner.

Thank you all for reaching out to us last week after “the fall” with prayers, cards and calls. It was an extremely sad night and although we tried to downplay it for Clarissa and Cayden, they saw Curt’s bloody face and chipped teeth and felt the sadness. We all spent the next day together; lunch, pedicures, shopping and movies. We had fun pushing Curt around in the wheelchair and just acting crazy. Our moods were back to normal by mid afternoon! Curt has recovered from his wounds and is getting his teeth fixed on Thursday.

Corbin has been in Oregon with my parents since the end of June. Curt drove with Larry on Sunday to pick up Corbin and they will all be home tomorrow. Clarissa got home today from visiting Mike & Melissa in Texas. She had a great time there visiting TCU and attending a Rangers game. Cayden & I have been home alone for a few days, it has been nice to be able to have time and energy to devote to one child.

I wanted to include a few photos from our 4th of July Weekend at Lake Nacimiento. Clarissa & Cayden &  friends. Cayden wake-boarding. Clarissa driving the boat (with a few tips from dad), while pulling Cayden (uncle Bill in the mirror). Corbin with Grandma and Grandpa.
Thanks again to everyone for supporting our family! We love you all!

Cindy, Curt, Clarissa, Cayden & Corbin


Gallie said...

Hi Curt and Cindy,

Wow, I never heard this side of the story. I just assumed that you and Curt “discovered” his illness together over some period of time. It must have been awful for you to have read the diagnosis about “tripping over the carpet” and to keep it bottled up inside until he returned. Thank you for sharing this!

It's amazing what can happen in a year, or in a day, or in a minute. I've always had trouble with the notion of time. I don't like it or feel comfortable with it, and the one idea that troubles me most is how in the blink of an eye our lives can drastically change. I think about my mom dying, and how one minute she was here and the next she was gone. I’ve wondered what was so special about that one minute, nothing really, except it contained an event so profound it would forever change my world. Prior to my mom’s death my world was the same as it always had been...safe, secure, and predictable. One minute changed all that.

A year ago your world changed! Before you read about Curt’s illness you had hope and visions of a long life together. I bet that in the time it took to read about Curt’s diagnosis all of that was shattered. For the first time you probably envisioned your knight in shining armor not so strong. You maybe even pictured him in a wheel chair...a thought I’m sure you never entertained. Sure, we all tell ourselves that one day we will be old and using a cane or wheel chair, but who of us believes it, really. You guys weren’t given a lifetime to mull over or adjust to the consequences of an aging body like most of us. You had just one minute.

The thought occurred to me that if one minute can tear our world apart then maybe, just maybe, in another minute our world can be brought back together again. If our dreams can be shattered so quickly, could they just as quickly be restored? I don’t know, it doesn’t seem possible especially given the severity of what you guys are dealing with, but intellectually I think it has to be true. My emotions say no, but my mind says yes. I’ll ponder that idea for a while.

One truth I have to believe is that it takes just one minute for our world to be torn apart, one minute to pass from this life to the next, and one minute to stand before our God and be reunited with our loved ones. It is in that minute that we will never have to worry about another minute bringing tragedy to our lives ever again.

With Love,

Steve for the Gallies

Kathy Jordison said...

Hi Cindy,

I was very touched by you sharing about how you first found out that Curt had ALS. I can imagine how hard it was to carry the thought of knowing it all alone. I can identify with you to some degree. A year ago May my husband was diagnosed with a mass on his kidney. He had to undergo a quite extensive needle biopsy to determine if it was cancerous. It did turn out to be cancerous and a year ago in August he had a very invasive surgery to remove the tumor and one third of his kidney. It was quite an ordeal to say the least. The doctor was able to remove all of the cancer, it had not spread, and he did not need any follow-up treatment at all. We all thank God for this.

Just like you did though, from the moment he was diagnosed with the mass, I just “knew” that it was cancerous. It took about a month for the whole medical process to finally deliver this news to us. It was a very, very long wait. My husband was shocked when he heard that the tumor was cancerous. I of course was not. It was a very long month of me trying to be positive and reassuring to my husband that everything was going to be fine when I just “knew” that it was cancerous.

The thing that got me through that time was God’s very strong presence reassuring me. I recently heard someone say, “God always shows up” in the midst of whatever you are going through. We have gone through some tough times in the last few years so I can definitely attest that this is true – “God always shows up!” In Steve’s comment he talked about how your life can change so drastically in one minute. That is so very true. The thing that gives me comfort in the face of this reality is knowing that God is already in that one minute. He exists outside of time and can see the end before it happens therefore He actually is already in that minute. So I believe it is God who allowed us to know our husbands’ diagnoses before they were even confirmed. C.S. Lewis said, “God whispers to us in our pleasures, speaks in our conscience, but shouts in our pains.”

I am praying that you and your family will continue to be aware of God’s presence.


Kathy (Steve’s sister)