The doctors at Emory are almost certain that my dad has Creutzfeldt-Jakob Disease (CJD)—which I, a layman, suspected two farking weeks ago! You can read all about the disease here: http://www.ninds.nih.gov/disorders/cjd/detail_cjd.htm This disease is invariably fatal. We are waiting for a definitive test result from the Mayo Clinic to verify the diagnosis. If confirmed, we face a horrific choice, ultimately my Mom’s: My father is currently on a ventilator, no matter what we do he has at most 2 months to live. If we take him off it, he will most likely die within 48 hours. He is able to breathe, though not well, and the CO2 levels in his blood build when he’s not getting enough air. Without the ventilator, he will essentially become carbon dioxide-toxic; he will slowly suffocate.
His alpha brain waves on an EEG have a peculiar spiking pattern indicative of CJD. He has not spoken in a month. He does not track with his eyes or respond to anything other than basic primitive stimuli. His kidneys are not working. He is on dialysis, which involves filtering his blood for three and a half hours via a tube from his jugular vein as thick and your damned pinky finger. He has the dropsy, or edema, so badly that his ankles are as thick as my thighs.
What we thought was at first just my dad being an asshole, later clear symptoms of manic depression/bipolar disorder, followed by a psychotic break, a coma, a vegetative state, and now finally a persistent vegetative state, has been caused by simple little protein chains called prions run amok in my father’s head. All the times I got so mad at my dad over his behavior, it wasn’t his fault. He was terminally ill and not in his right mind. I feel so damned guilty.
The disease is not contagious unless you come in contact with his brain tissue or spinal fluid, meaning, most likely, that my father will have to be cremated because it wouldn’t be worth the risk to have him embalmed, etc. No one knows what causes the form my Dad has. It does not appear to hereditary as no one in family ever dies (at least in my lifetime).
When I was a missionary, from 1993-1995, my father kept a journal. He addressed his journal to me every day and he wrote to me about the trials and successes he faced during those two years I was gone. He was involved in building up a company, stressed by the responsibility of keeping it going and keeping people employed; he felt a kind of responsibility to them. My Dad was a consensus builder, and always liked involving other people in his projects. He would never go it alone. In early August, when my dad was really starting to show serious symptoms, which we believed to be an acute manic episode, I found the journal that my dad had written to me. That night, I read almost every page of it. I felt this special bond to my Dad. I know, for a fact, without a shadow of a doubt now, that I was meant to read that journal then. I knew in my heart that something was wrong, terribly wrong, with my dad. I could feel it. I wanted to reach out to him, but couldn’t say the words out loud to him, as I was really angry with him over his treatment of my mom. This is what I wrote to him:
From: Mac Williams [mailto:firstname.lastname@example.org] Sent: Friday, August 10, 2007 2:44 AM
To: Dad Dad DaddioSubject: One for Another
Tonight, I was going through a box of all my stuff I got out of storage when I found the journal you kept for me during my mission. I was immediately drawn to it; now that time and forgetfulness have waged war on my memory, I couldn't put it down. I read almost all of it tonight. You were so frank with your thoughts and feelings and spiritual stuggles.
I see how often Mom and Susanna left you alone, and how you don't like being alone. I think of how the other night I really wanted you to come join us for dinner, and how you didn't. We wanted you there, I wanted you there. We weren't trying to leave you alone.
While I was honored at the time you gave it to me, admittedly I only ever gave it a cursory look. Today, I see just how difficult those two years were on you. I thank you so much for you labor of love for me. I am going to put this on my bookshelf and cherish it alongside my most highly prized books. When I finished it, it brought a tear to my eye. I love you so much Dad.
I began to think back to what I was doing on those days when you wrote how hard a day you had, and now that I'm older I can understand better the trials you went through to provide for us. I can't really tell you how much I appreciate this journal now.....more that I ever could have imagined I would that night you gave it to me so long ago. I hope I didn't seem too indifferent to it back then, that I didn't stomp all over your excitement in giving it to me. I was young and foolish at the time, so if my reaction wasn't what you had hoped for then, please know that now I am indeed grateful. I'll try and do the same thing for Jack some day.
I'm fighting back the tears right now as I write this email at 2:30 in the morning, with my babes and my babe fast asleep in the back of the house. You are an excellent father.
I love you,
Somehow I knew that my dad and I wouldn’t have much more time together. I fought the feeling at the time, but I now I see clearly what happened. I sent the email and went to bed. I found this response in the morning:
RE: One for Another
From: John Williams - SafeNET (email@example.com)
Sent: Fri 8/10/07 3:12 AM
To: 'Mac Williams' (firstname.lastname@example.org)
Now that you are a tested father, you understand why I did it. You and Susanna are so important to me. By writing down what I was doing and feeling, I left you a gift that is better than an antique.
The reason I did not meet you the other night is my health. I am having a rough time lately and my energy level is low and I am not getting any rest…as you can see from the time-stamp. The last week has been a week from hell.
I love you son.
You’ll notice that the time is the middle of the night. One of the symptoms of CJD is massive insomnia. Also, notice that he uses the definite article (the last week) instead of the more usual demonstrative (this last week). This was the last meaningful correspondence/conversation I had with my father, and the last normal week he ever had.
It is priceless to me.
I love you Dad,