Still reeling from the news I learned this morning that yesterday, the infamous anniversary of the death of C. S. Lewis, my “therapy buddy,” Sofie Ross, passed away after several years in a nursing home. 16 1/2 years ago, we had the same surgery within a month of each other.
Sofie was a dynamic little old lady who would go to Mass every morning, and then walk several miles. She was a regular visitor in our home during the afternoons.
While my parents often experienced the frustration of loneliness and helplessness dealing with my Marfan syndrome and my mom’s health issues–a loneliness and helplessness my wife and I feel in spades between my ever-declining health, our eldest’s battles with Marfan syndrome, and now 3 children diagnosed as severely autistic, as well as my wife’s own struggles with metabolic problems and a possible connective tissue disorder–Sofie had become a bright spot even before our surgeries, often stopping by late in the morning or early in the afternoon to share a cup of coffee with my mom and chit chat.
Then, in May 1996, shortly after we had been told that I had to have my aortic root replaced, Sofie passed out one evening while watching the news, blood coming out of her mouth. At the hospital, they said her aortic valve, damaged by scarlet fever in her childhood, had ceased working. They put in a St. Jude valve. I’m pretty sure it was a month to the day before mine.
My surgery was on June 10, 1996. Ironically, the weekend before the surgery, we watched one of those pseudo-documentaries on end times theories that mashed up various Y2K theories, fundamentalist theories, real or alleged Marian apparitions and Mayan calendar. The show speculated that, since Mayan mythology said the previous era of human civilization had been destroyed by an uprising of animals, the prophecy might be fulfilled by an uprising of technology, and it showed a hokey dramatization of people being attacked by small appliances.
At the time, I thought how irrelevant that was to me, since I probably wouldn’t live to see December 2012. Well, the jury’s technically still out on that, but it’s funny how God works. Mary always says how she thinks we live in a novel, and I say, “Of course we do. We live in God’s novel.”
Both of us opted out of doing formal physical therapy, and instead we would take walks together. She’d call up and say, “ready to walk?” and Mom and I would meet her at the mall.
And when it got tough, we would talk each other through it. Sofie, the old lady who’d always thought of herself as the picture of health and now had to cope with having a health problem; I, the sickly Marfan kid who’d grown up with this aneurysm looming over my life and now had some semblance of hope that I could be “healthy.”
After those first few years, and a miraculous healing that I’ve recounted before on this blog, I of course met Mary, got married and enjoyed about 5 years of relative health.
In 2003 or 2004, I started suffering the severe migraines and various neurological problems that were eventually identified as stemming from an enlarged venuous structure in my left motor cortex, as well as a tortuosity in my carotid artery and possibly a brain aneurysm, though as with many such issues it took years of being told it was just stress, hypochondria, etc.
Then I developed my descending aortic aneurysm in late 2006/early 2007. After 5 years in Virginia, my wife and I moved back to South Carolina and found out that Sofie had suffered a massive stroke the year before, which left her unable to remember the past several decades and thinking that she was in her 40s.
I went to visit her in the nursing home once. She recognized that she knew me, but she didn’t know why. She said, “I was really good friends with your mom, wasn’t I?” I said that was right. “How did I know your mom? Did she work with me? That’s right. I think your mom was my boss.”
It was really tough. I visited her husband several times at their house, but I couldn’t bring myself to go back to the nursing home because of fear.
I’ve never had much, and my brain has always been my compensation for the torture my body puts me through. What I’ve lost the past 8 years from these aneurysmal areas in my brain has been frustrating enough. It’s often difficult to retrieve basic information like my name. In some respects, I’m as sharp as ever, but since the problem is with my motor cortex, I struggle to express the kind of information that should be “rapid response” like, “How old are you” or “Please sign your name here”. I have to stop and think about those questions just as much as about questions of philosophy or theology or literary criticism.
When I visited Sofie that one time in early 2007, I already knew that the neurological problems I was having probably indicated brain aneurysm, and I knew that brain aneurysms are almost impossible to detect by most scanning techniques, so I didn’t expect the doctors to find anything–and when they did finally find it, and get me to the right neurologists to talk to, all they could do was offer me the peace of mind that this was all real. But by that time my descending aorta had dissected. I was already on tons of blood pressure medication, so there wasn’t much else they could do, and of course the two areas as I well know, and they’re afraid to say directly, contraindicate surgery to each other. Why go through surgery on my aorta and have the brain aneurysm burst afterwards, or vice versa?
So I’ve been enduring this limbo and trying to live my life as best I can. The other day, I went grocery shopping and couldn’t make it through the store without chest pain. Then yesterday, I couldn’t even open the car door without feeling like I was lifting a heavy box. And, as always, there is so much to be done and I have so little, and one woman cannot handle the many things that my dear wife has to shoulder.
And for the past 5 years, I’ve constantly thought of Sofie in that nursing home, living in a mental limbo that paralleled my physical one. I have lived in fear of suffering a stroke and losing my brain, and I have envied the kind of bliss that such a state might ironically provide.
And as we always felt a bond over our surgeries, and as there have been so many parallels in our journeys since then, I felt there was a link in our sufferings, that as much as Sofie represented a fate I feared more than anything, perhaps she was living that fate for me.
Emotions are strange things. In the past 6 months, three dear ladies from three stages of my life have passed away, the first the newest friend, a lady the same age as my mother, whom I had hoped to have the chance to know for years to be the influence in my childhood that some of my parents’ older friends had been for me. She had spent a whole day with our kids less than two weeks before her death, fulfilling an offer she’d made months before to watch them for a day so we could get a break. Then the lady who introduced my parents to each other, whom I hadn’t seen in over 20 years, who had retired to Florida, passed away the same weekend we learned of our Make a Wish being granted.
Now, Sofie’s gone to her reward, and as I feel my health slipping away daily, I’m not so much afraid of death–though admittedly that comes and goes, and usually comes in the form of fearing that God will say I haven’t done enough–I fear becoming more and more of an invalid, and becoming more of a burden.
As it is, I’m an awkward obligation to my family: a pathetic shell of a man, a reminder of all the potential my mind gave me that my body constantly took away, with too many personal debts ever to repay, and a messy house, and that is my epitaph.
When it comes to the old Native American saying about walking a mile in someone’s mocassins, Sofie Ross was one of the people who truly walked many miles in my shoes–we walked them together–and I will miss her greatly till I see her again.