HOW THIS GOT STARTED
In 2010 we were living in California and we were as happy as we could be.
One day Brian started having trouble with his hands. He had trouble gripping his tools at work, then started asking for help tying his shoes. Once his mobility was affected and he started tripping and falling, he finally went to the doctor. He also started experiencing some muscle spasming in his arms.
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The primary doctor didn’t know what was wrong so he sent Brian for an MRI. Those results were sent to a neurologist and we waited. Brian spent time online assessing his symptoms. One night Brian came to me and said, “I think it might be ALS.”
I asked him what that was.
“Lou Gehrig’s disease”, he told me. “If you get it, you lose the ability to walk, talk, eat then breathe.”
“Don’t be ridiculous,” I told him. “It’s not that,” I said with confidence, though now that he’d described ALS in a bit more detail, I had to wonder.
We went about our business as we waited for the test results, both anxious and trying to keep our mind off of it.
A couple of weeks later his doctor called him back to review the results. I went to work that day. My office was only a few minutes from our house but that day I was part of a team launching a product at another office 30 miles away.
Around 10:00 am we were smack dab in the middle of a go-live assessment meeting for our project and my phone was not in my pocket. As soon as that was over I went back to my station, grabbed my phone, looked and saw a message from Brian. In it I could tell he was upset.
I knew he was going to the doctor but I honestly thought it was just going to be something minor. Something we could easily address with physical therapy or medicine. Plus, I figured if the doctor were going to be delivering really bad news, he would have Brian come with someone.
My stomach started turning. I excused myself from the team and found a little cleaning supply closet to step into where I could have a little privacy to call him back. Staring down at a yellow mop bucket with dirty water in it, I listened as the phone rang, barely even once.
He picked right up. Crying and barely audibly I heard, “He said I have ALS. Come home.”
That was the longest 30-mile drive home. I cried so hard that at the stoplight close to home, an older woman rolled down her window, signaled to me to do the same, and asked if I was okay. I told her yes, that my husband just got a terminal diagnosis. She said she’d pray for me as the light turned green and we parted ways.
Once I got home Brian handed me the small pamphlet that his doctor had handed to him while he’d told him, “You have ALS. You’ve got 2-5 years to live. It’s time to start getting things ready for that.”
That was it. He gave Brian life-shattering news in such a cold manner, with no one there to support him or hold his hand. A few months later, I wrote that doctor a seething letter about his terrible bedside manner, demanding that he look inward to figure out how to better himself for future diagnosis delivery to patients.
Over time I’ve pondered this subject so many times and I think that many in the medical profession have had to create some sort of protective layer for themselves or it would hurt too much. Doctors can’t get vested in every patient, or the weight would be too great. It would be too painful. That’s what I tell myself anyway. (The other parts of my brain just screams what an asshole!!!!!)
That day, we sat on the couch while I reviewed the pamphlet in horror, reading in detail what would happen to the love of my life as the disease progressed. It was just as Brian had told me. He would slowly lose so much until he died. We cried for days, numb to it all, not knowing what to do or how to feel.
We tried to act normal and had do normal things like go to work and to the grocery store. It felt like being a zombie, just walking around in a daze of emotion, most certainly denial, confusion, and anger.
We sought out a 2nd opinion at UCLA. An EMG was performed and the diagnosis was confirmed. I could tell that day as they ran the tests, just based on how the doctors were talking to each other, that it wasn’t good.
On February 17, 2011, an ALS diagnosis was confirmed.
That is actually an incredibly quick diagnosis. Many people search for months before a diagnosis is reached.
We spent months trying different medications, holistic plans, had the mercury removed from Brian’s teeth, tried an all organic diet, yada, yada, yada. We thought maybe it was lyme disease, misdiagnosed. Nope. Brian has ALS.
That was just the beginning of a curtain being pulled back on the entire healthcare system. We started to see just how broken the system really is, and how so many within it simply do not care. At this point my feelings are of utter disdain and disgust but I’ll get into that later.
For some reason I kept staring at a message a friend recently sent me on Facebook.
That time in my life is such a blur. I can remember telling certain people about it at specific times and places. Some folks found out in ways I didn’t want them to. I’m not sure how others found out. Feel free to share your story about how you learned of Brian’s diagnosis, or of a loved one. No matter the disease, learning something like that can be really tough.
An ALS diagnosis is shocking. It stuns you. Not just in the moment, but from that point forward.
In what felt like an instant, three little letters changed our lives forever.
Silver lining: Luckily, we both had the same attitude about things once the complete and utter shock wore off a bit. That was one of figuring out the best way Brian could LIVE with ALS, and that’s meant a lot of adapting.
It’s been a lot to endure, but he’s still here and I’m beyond proud of him for a million reasons.
#als #alsawareness #alsawarenessmonth #10daysofals
