Tuesday, June 26, 2007

I suppose I should start at the beginning.

Welcome to my blog. I never really thought I would be a blogger...not a serious one, anyway. So how did I end up here? It certainly wasn't brought on by the best of circumstances. I'm going to blog because I'm not going to be defeated by this. Maybe, just maybe, by getting out all the stuff that's floating around in my mind, I will keep emotional breakdowns at bay. That would be a welcome change. And maybe in the process of telling my story, I can be of some encouragement to others facing a similar challenge. But I'm getting ahead of myself...

Forever in my mind

President Roosevelt called December 7th, 1941 a day that will live in infamy. No one who was alive during the attack on Pearl Harbor will easily forget the horror of that day nor the events which were set in motion as a result. The nation and the world were changed forever. I was still 45 years shy of making my entrance into the world at that point...but I have my own day that will live in infamy, forever seared into my mind. My life, and the lives of my family members, seem to have been changed forever.

It was a Wednesday in early February 2007. I knew my mom had a doctor's appointment that day, and I knew we were expecting some answers. By that time, we had been looking for answers for a year and four months...since Mom's first seizure. The doctors had thrown around all kinds of possibilities, but nothing seemed to account for the symptoms she was experiencing. Finally they diagnosed her with Antiphospholipid Syndrome (APS), a somewhat rare blood disorder. The APS had caused one or more strokes, which caused the epilepsy. But when the neurologist reexamined some imaging, he didn't think that all the neurological damage had been caused by strokes. So off to the stroke specialist she went. In the meantime, Mom had stopped working and had begun receiving disability, she had stopped driving, and she had seen more doctors and had more tests than we could believe. And her mom (my grandma) and all her siblings had refused to believe anything was wrong and decided to cease communication (but that's a story for another blog).

I got the call in the afternoon. I was in the beginning of my sixth semester at Indiana Wesleyan University. I skipped chapel that day...I skipped a lot of chapels that semester because the emotional weight of dealing with Mom's health proved crushing for a time. In as cheerful of a voice as I had heard my mom use in a long time, she said, "Well, he said it's Alzheimer's. Early onset, they call it, since I'm 45. So, that's it! Now we know! I'm totally fine with it. I'm hopeful. I'm excited." For whatever reason, I was numbed to the gravity of the moment. "Well okay then," I said. No reaction. No tears, no questions, no anger...just, "well, okay then." Really, I had already thought about Alzheimer's before as a possible cause of some of Mom's symptoms; it just seemed to fit. So when she told me, it confirmed my suspicions.

I got off the phone and wondered why Mom had sounded so cheerful. And I wondered why I didn't feel anything at all. I thought about Mammaw, my great-grandma, who had passed away two weeks earlier from the same disease. I thought about how Mammaw didn't know anyone and eventually stopped speaking and eating. Still, nothing. So I went to work, ate dinner, worked on homework...it was on my mind, but I was unaffected. Then my phone rang again.

It was a man from my student loan provider, and he told me that I had to start paying off my loan at the end of the month. Panicking, I listened to his courtesy call and then promptly tried to call Brian, my stepdad, to figure out what in the world was going on. I still had a year of school left; I shouldn't have to worry about loans. But Brian didn't answer. I called him over and over. I called Mom's cell phone, and still no answer. I must have called the two of them fifteen times. So I got online, looked at my account information, and called the 800 number to get it straightened out. After a quick conversation, we realized where the breakdown in communication had occurred and everything was fine again. Everything, except me.

Mom called back and asked what I needed. I started telling her about the courtesy call, and as I explained my frustration, I started to cry. "It was just confusing! And I didn't understand what he was telling me!" I sobbed. Then Mom asked, as only a mother can, "Is that what you're really upset about?"

I lost it. I cried and cried and cried, and so did Mom. We had both been tough and strong for each other earlier in the day, when all we really needed was to cry with each other. And cry we did. I told her how scared I was and how I didn't want her to end up like Mammaw. She told me that she was scared too...but that we'd face it together. I don't remember the entire content of that conversation, but I remember both of us telling each other over and over again, through the tears, "I love you so much".

Diagnosis...now what?

The remaining months of the semester can be summed up in one word: dysfunction. I sank deeper into the depression that I always seem prone to, and it was usually all I could do to get out of bed in the morning and keep from crawling back into bed in the afternoon. I skipped a lot of classes and ate a lot of junk food; I cried a lot and dwelled on horribly negative thoughts of the future. I praise God for amazing roommates, friends, and professors who helped me, invited or not, to keep my sanity during that time.

The worst part was being so far away. Granted, it was only three and a half hours, but the sheer fact that I wasn't at home was killing me. I didn't want to be at school anymore. I started counselling, which was very helpful. I learned that I was grieving, and that that was okay. I did learn, however, that there are acceptable and unacceptable ways to express my grief...unacceptable being skipping class and taking five-hour naps. Kelly, my counselor, kept giving me permission not to be perfect and that was huge. She instilled in me the importance of taking care of myself all the time, not just waiting to take care of myself when crisis strikes. Counselling was a highlight of that semester...I found validation for my emotions and I found someone who I could talk to without worrying about being burdensome or a downer.

In some ways, not being with my mom everyday after the diagnosis added fuel to the fire of my imagination. I figured that I couldn't tell how she was really doing over the phone and that Brian wouldn't tell me so I wouldn't worry, and I assumed that she was going downhill. Certainly some of her symptoms did progress during that time, but hardly to the extent that I made myself believe. I caused a lot of undue stress by letting my mind run away with me. Mom started driving again, and while I was happy for her regained sense of indepedence, I was worried about her getting lost or into an accident. Was Brian using clear judgment, or did he just feel bad about taking away her mobility? Questions like this plagued me.


The semester came to a close and I came back home. Funny, while I was at school I just wanted to be home. As soon as I got home, I wanted to be anywhere but here. I had to go through a period of adjustment to how Mom had changed, and I didn't like it. I felt trapped...whenever I had emotional reactions at school, I could express them whenever and wherever I wanted. The dorm was a safe place to let it out. When I got home, I couldn't express my emotions at home openly for fear of hurting Mom. I was forced to bottle it up until after Mom and Brian went to bed, and then I could cry as silently as possible in my room. And as my stepmom once told me, "No one should have to cry alone." I have done more than my fair share of that during these last few months. In fact, that happened just last night (more in a later post).


So there is the beginning of my (and my mom's) story. I know it's long, and if you're still reading, I applaud you. There is much more to say, especially about the time I have been home, but I am getting tired and should probably save that for another day. Just one more thing before I call it a night...

You may be wondering where I came up with the name for this blog, "Element of Blank". No, it's not a play on the "blankness" that can come along with AD. It's from an Emily Dickinson poem:

Pain -- has an Element of Blank --
It cannot recollect
When it begun -- or if there were
A time when it was not --

It has no Future -- but itself --
Its Infinite contain
Its Past -- enlightened to perceive
New Periods -- of Pain.

Sorry, I know it's a little dark. But sometimes there's beauty in darkness, beauty in pain, because there's truth in it. Right now, that Dickinson poem is truthful to my life. I hope it's not too truthful to yours, but if it is, then you've just found another companion on the journey. I welcome your comments and thank you for stopping by.


Anonymous said...

Your blog was so touching...I am so sorry to hear about your mom...you and your family will be in my prayers.

Deb said...

Miss Kelsi... I had no idea. I would love to be a part of your life as you journey through this. It would be an honor in fact. I can relate on the most minute level... my grandmother also succumbed to Altzheimers... She and I had a connection like no other... and to her dying day, she knew I was her beloved granddaughter though she didn't know my name. She died my first week of college here at IWU. I was not allowed to attend her funeral and it devastated me. This Christmas, we will be in Florida and I will get to visit her grave for the first time since her death in 1990. Even typing that, I well up with tears for I still mourn her. I love you Miss Kelsi! Thank you for sharing your heart...

Amanda Moore said...


You are such a strong woman. I would have never known by talking with you at school that you were dealing with such heartache. My grandma most likely has Alzheimers. Her doctors don't want to diagnose her until they are sure. It is frustrating. She seems to be drifting farther away from us. My family is almost certain she has Alzheimers. I have many of the same feelings you have and it's not easy. I enjoyed reading your story and I am sure God will bless you and your mom so much! Keep trusting in him! Without God what do we have.
Love you, Amanda

Anonymous said...

I just wanted you to know that since I read your post I have often stopped to think of and pray for you and your family. I have not ever had to experience anything like what you are going through now, but I work with people who struggle with Altzheimers and I have seen the toll that it can take on their families. I know that my words cannot possibly make things better or even easier for you. But perhaps you will find it comforting, even if only slightly, that someone is lifting you up to God, even on the days when you are too tired to reach for him. I will continue to read as you see fit to post and will be covering you in my prayers...
- Penthos