I am still at a loss about how to begin this journal. First, I will always be so grateful for the depth of your generosity and love in the numerous ways you have all shared your concern and support for Chris's spirits and comfort and for our family's welfare. Your smiles and hugs go such a long way in easing our pain. Chris has remarked many times in the past two months that each time someone marches into our home, armed with casseroles or smoked pork, Gazpacho (made even better after a day in the frig!), mousse or Graeter's ice cream, that he is moved to tears because of the visible love that each gift represents.
And as I type these words, I still cannot believe the rapid progress of Chris's disease and its resulting symptoms since mid-May.
Because some of you are just now learning about Chris's diagnosis with ALS, I will offer up a brief chronicle. March of 2010 Chris began to encounter some physical challenges that he'd never experienced before: shortness of breath while walking Gatsby to the top of the hill in front of our house, inability to button his shirt collar, an unusually slow recovery from a knee injury while chasing Gatsby at the dog park, a tremor in his left hand. Of course, he never mentioned any of these to me and I thought he was beginning to experience arthritis like most in our mid-50's when I noticed a limp. During a physical exam last fall, his doctor expressed real concern at an extremely high enzyme count -- and thus began a long series of tests. In spite of our growing concerns, neither of us ever truly thought about ALS -- the doctors always comforted us with the news that "ALS is off the table." I finally realized one night this past April that something was very terribly wrong when I noticed how labored his breathing had become as he slept beside me.
But just seven weeks ago, Chris's neurologist told him that, in fact, ALS was the explanation for all of his mysterious symptoms. He recommended that Chris seek a second opinion at the ALS Center at Emory Clinic. After three hours with some of the most compassionate medical staff we'd ever met, on June 15 Chris was given the even more devastating news that Chris's form of ALS is a very swift moving disease because, unlike with most ALS patients, it began in his diaphragm -- the muscle affected that is the inevitable cause of death for all ALS patients. He was told that rather than living with the disease for a number of years, most likely he will only live with it for six months -- maybe less, perhaps a year -- but that he does not have very long to live.
Of course he was completely shocked at the finality of this particular kind of diagnosis. Some of you may have heard him express his first response at this news on that day, borrowing from C.S. Lewis, that he found this to be a "severe mercy." During Chris's work as a chaplain he's gained a personal knowledge about the kind of suffering that people endure with diseases of this nature and the thought of a very long struggle with ALS brought him great anxiety. He expressed that he is not afraid of dying -- that his abiding faith in God's love and his certainty in an after life and the kingdom of God that exists beyond our known experience in this world gave him great peace. But the difficult part, as he shared in his next to last sermon to the community at COS, was just in knowing how to find the way to that end in these frightening days.
It has been so painful to see Chris come to the decision that he was no longer able to minister to his patients effectively at Compassionate Hospice. He has thoroughly enjoyed the camaraderie of the staff at CH and the stories he's been privileged to hear from his courageous patients. But it broke his heart when he realized that he must name an end date for his employment with Church of the Savior in order to begin the process with social security disability. More than anything, he didn't want to break his commitment to the Beloved Community. Yet in spite of the outpouring of loving encouragement from many at COS that such decisions are understandable when so much in his final days must be tended to, he began to feel paralyzed in his decision making.
I think Chris had been aware of his confusion even before I saw it. But in one short week, Chris's confusion became heightened the last week of June.
On June 15 we had made an appointment with the doctors at Emory to attend his first clinic day -- a day when the ALS patient benefits from the expertise of a multi-disciplinary team of specialists -- but that appointment wasn't to take place until the third week of July. When I began to fear that his mind was not functioning rationally, I tried to reach out to the ALS organization and clinic staff. At first we thought the confusion was the result of Chris's not sleeping for more than an hour each day for a period of three weeks. When Chris had first met the staff on his June 15 visit, the doctor told Chris that he wasn't sleeping because his body knew that he must wake up to be able to breathe. Although his oxygen intake was normal at that time, the CO2 build up was a problem because his body wasn't able to expel his breath without the function of the diaphragm. Although he was immediately prescribed a bi-pap machine that offered assistance in order for him to be able to sleep once again, the delivery of the machine was delayed for two weeks because of various complications.
By the time Chris was sleeping again, the lack of sleep had already taken a toll on his ability to reason and his symptoms still did not subside. Chris's doctor at the clinic referred him to the neuropsychiatrist who works with ALS patients with similar symptoms and would be able to consider various fronts in the search for relief to Chris's confusion. Unfortunately, it was impossible for us to obtain an appointment for Chris to see the doctor until the following week -- but I knew that his condition had deteriorated so rapidly that he needed attention immediately. So last Friday I made the decision to get him to the emergency room. Fourth of July weekend proved not to be a good time to be admitted to the hospital, it seems! All of the doctors and the nurses we've been working with were on vacation and we were faced with repeatedly explaining our story to medical staff who didn't understand the rapid deterioration of his illness.
Saturday morning Chris began taking medication that now seems to be having some effect on his ability to think rationally. But this change is quite painfully slow. Because this experience has been so confusing for Chris and he is still so disoriented, we still feel that Chris is not able to receive phone calls or visitors beyond our immediate family. We are hopeful that he will be able to come home soon, but we still don't know exactly when that will be.
After the emergency, I have been exhausted to the point of not even being able to return most phone calls. I have worked with Melanie, Linda, Ann (thanks for patiently coaching me on texting), and Terri to try to stay connected with our Beloved Community, but I know my delay in posting more specific information has been extremely stressful for many of you who are so deeply concerned about Chris's condition. Please know that one of Chris's greatest concerns is the grief that his sudden turn has caused for you. He would love nothing more than to be at church, exchanging "a hug or a kiss." But because of the pain that he feels in not being able to control his disease or his feelings about this disease and all the rapid changes in his life, he simply needs to disengage for a time.
I regret that this first post seems so dismal. I also apologize for its length! The past week has been so difficult and is fraught with complexities that are hard to explain with brevity. But I feel I need to be honest with you because that's one of the things I cherish most about our community -- we are drawn to worship together because we seek honest expression of our Christian experience. And we have always practiced our firm belief that God can handle whatever emotion we bring to worship. Please pray that even in the midst of his confusion, Chris will find peace and, like the disciple who implored, “Show me the way,” will hear Jesus’ strong and clear words: “I am the way.”
I promise future postings will not be as long :)
Peace and love,
Carol Graham
