Wednesday, September 19, 2012

Life Changes (Living With Cogan's Syndrome)

August 7th:

“Grandpa fell,” I heard my dad say on the voicemail message. Due to distant, quiet speech and his low, male voice, the only other words I made out were, “It's pretty bad.”

I ended the call and sat for a moment trying to grasp what I had just listened to. Grandpa fell? What else did my dad say? Just moments earlier, I had been sitting in a chair in my in-law's living room, working on a blog post while Sarah was at work. I noticed my dad was calling but I knew I wouldn't be able to hear him over the phone, so I opted to wait until he left a message. When I finally picked up the phone to listen, what I heard was distressing.

I lifted the laptop off of my lap and placed it on the end table. I stood up swiftly and bit my nails. Still holding my phone, I searched for Sarah's work number, made the call, and paced through the living room.

“Hello?” she said.

“Hi baby,” I said, my voice breaking and tears already loose from eyes. “How are you?”

“I'm fine, just busy.”

“Sarah, my dad called. He said that...that Grandpa fell and that it's bad. He said some other things but I couldn't make it all out.”

“Really? Oh my gosh. Okay sweetie, I have a voicemail from your dad also. I'll listen to it and call you back,” she said with concern in her voice.


I waited for a few minutes, standing alone in the room, awaiting the call from Sarah; waiting for her to tell me I heard it wrong and that everything would be fine.

The phone rang.


“Hi, Max,” Sarah said. “I listened to the message. Your dad said that Grandpa fell two nights ago and had been on the floor for a day and half. He managed to crawl to the refrigerator and pull drinks off of the bottom shelf, but couldn't move much more. Your dad found him this afternoon. He said that it doesn't look good, but that they are at the hospital waiting to find out more.”

I didn't say anything for a moment.

“Sweetie?” Sarah said. “Are you okay?”

“Yeah. I guess,” I said, wiping away my tears and regaining my composure.

“Honey, I wish I could be with you. I'm sorry. I'll be leaving work soon.”


“I love you, Max.”

“I love you, too.”

I closed my phone and sat back down. I didn't want to talk to Sarah's parents about what had happened. I wasn't ready to speak with anyone. I picked up the computer and scoured the internet for another hour, doing my best not to think about what was going on but having a very hard time blocking it from my mind.

Sarah got to her parent's house a short time later and we ate dinner with them. As we sat around the table, we told them what had happened and prayers filled the room.

When Sarah and I got home later that night, we started going through the mail, all the while, wondering what was going on with my grandfather.

Sarah handed me an envelope sent from my alma mater, which was also the place I worked. I opened it up, wondering what it could be. A little over a month ago, I got a call from my boss that I would need to have my doctor fill out a form stating when I would be able to return to work. Personally, I was unsure of how long I would need to remain at home. I was still plagued with vertigo, unable to drive long distances. On top of that, the more activity I'm involved in, the dizzier I get, leaving me utterly exhausted—needless to say, working with 12 nursery school aged children would be quite the adventure.

Doctor Russo, who would be the one to sign the document, was also unable to give a definitive date. The rarity of my disease and the fact that there are varying degrees of severity for each patient simply leaves no room for concrete answers. Thus, together we had decided to say that I would hopefully be able to return to work in October.

As I pulled the letter from the envelope, my heart sank at what I read. Someone from the Human Resources department was regretfully informing me that I was being let go. The letter stated that due to the fact that my contract would be running out at the end of September, and that I was unable to return until October, the school needed to hire someone else. It also mentioned that I had never returned a signed copy of my contract two months ago, anyway. The letter concluded by thanking me for the work I had done at the daycare, and wishing me luck in my future endeavors.

I looked to Sarah and re-read it to her.

“Wow. How do you feel?”

“Well...” I said, unable to look her in the eyes. For the second time that day, for seemingly unrelated reasons, I broke down.

Sarah brought me into the living room and held on to me until I was ready to speak. Even though we had prepared ourselves for this, it was still a shock. Before coming to a decision with Doctor Russo about when I'd be able to go back to work, Sarah and I both agreed that worse case scenario, I'd lose my job and be in the same position as I was now—but that we'd make it work like we have been. Only, now that that had become a reality, it was harder to take in than I had imagined. For both Sarah and me, the simple fact that I did not have a job secured to which I could return was the hardest part. Reality was availing itself to us individually. What if I can never go back to work? I want to provide for my family and I can’t, I thought. Sarah let the idea simmer that her income was officially the sole financial support for us. I was hurt because even though I hadn't seen the kids or my co-workers in months, I missed them and now I would never be able to see them on a regular basis again. People don’t usually plan for these sorts of situations. We often have an expectation that life will go exactly how we have always visualized it—and here Sarah and I were, comprehending how much had changed in mere months, days, hours.

Something else was nagging me too: I knew that I had signed a copy of my contract and emailed it to Human Resources back in June. I opened the computer and signed in to my work account. I searched through the emails and was shocked at the irony of what I discovered: I never sent the contract to Human Resources; I had accidentally emailed it to myself. I started to wonder—although I didn’t fully understand it—if maybe this was supposed to happen.

We sat motionless on the couch for a few minutes.

“Max,” Sarah said, breaking the silence, “while this is hard for both of us to fully grasp right now, we knew that this could happen. Maybe God led us to this point for a reason. You can't go back to your job, but since your illness began, you've discovered your love for writing again. If you hadn't been out of work for so long, you may never have done a thing with it. I'm not sure if there will ever be another time in your life in which you can fully pursue your dream. What better time than now?”

I stared into her eyes, listening to the encouragement coming from wife's heart—and on a day like today, it was exactly what I needed.

Sarah, I believe struck by a realization, continued.

“I have a new job and I am content. This is the first time since I started to work full-time that I am actually beginning to believe that my time will come. I want to be able to sing, and create art, and follow my dreams. But with everything that has happened so far this year, I'm looking at the bigger picture. I still have time. I don't mind working full-time while you are going through this if it also means that you can do what you love.”

“I just...I just don't want you to resent me,” I said.

“Max,” she replied, pulling me close. “I will never resent you. I want you to know that, since you have gotten sick, I have not once been upset that you are not working. It’s not your fault. My daily thoughts about you go like this: I’m glad Max is hearing better today. Or, I’m upset that Max isn’t doing well today. I care about who you are, not what you do. I love you.”

“Thank you,” I cried again, but this time I was not upset. “I love you, too.”

A little while later, after Sarah and I had both calmed down from the letter and from our conversation, we found out from my parents that my grandfather had broken his hip and shoulder and had kidney failure. They weren't exactly sure what was going on with him, but they were still waiting. Both of my parents were scared and the uneasiness and anxiety that I had felt for most of the day lingered.


  1. Y'ALL ARE TOUGH. "Keep on keepin' on!"

  2. Love you, Max and Sarah! Your relationship is beautiful...a reflection of the Lord's presence and grace in your lives!