Hopes dashed. Options reduced. Plans and fantasies dismantled. Depression. Loneliness. Frustration. Anger. Desperation. Isolation. All because a man died upon a cross on a lonely hill outside of Jerusalem.
Although I’m forced to conjecture upon the situation in which Thomas found himself, since we are not told why he was not with the other apostles when Christ appeared the first time to them, I sense that I am probably not far awry about the feelings Thomas must have been experiencing during those agonizing days following the crucifixion of Jesus. Thomas, the apostle who offers to die with Jesus on His way to Bethany (John 11:16). Thomas, the apostle who interrupted the last discourse with his question “Lord, we do not know where you are going. How can we know the way?”(John 14.5). Thomas, the apostle who doubted the Resurrection unless he were to touch the wounds of the Risen Lord (John 20:25-28). Thomas, the apostle who, after Christ’s appearance, confesses his faith in the words”My Lord and my God” and is thus the first to confess explicitly Jesus’ Divinity following His death and resurrection. Thomas, the apostle whose confession of faith is saliently recited by Catholic and Anglo-Catholic worshipers throughout the world during the elevation of the elements during the prayer of consecration of the Holy Eucharist. Thomas, the apostle who may guide us to a deeper understanding of our faith response in times of crisis as well as celebration.
I believe that although our times are different from the 1st century disciples and followers of Christ, the people are the same and so is the loving message of God. We are living in a very different time than Thomas. I suppose many of us would think we therefore are quite different. But, are we really?
Prior to my coming to Birmingham, I was the full time Episcopal Chaplain to the Johns Hopkins Medical Institutions. I carry many fond memories and often think of many of the very special persons I had the privilege to work with and share life with during those six years. One April, right after Easter, I received the first of three letters from a very special woman which I want to share with you.
Martha and I met Ellen through the intervention of a college and seminary classmate of mine. This classmate had a parishioner who was coming to Hopkins to receive an experimental transplant - her own bone marrow. See, she was suffering from leukemia and there existed no matches for her to receive someone else’s bone marrow. A new, risky, highly innovative, experimental procedure. Her chances of cure only a guess; her chances of survival very, very slim. Dennis called the Diocesan Office and wanted to know if a priest might be able to visit her while at the hospital. He was delighted to hear that I was there.
As we talked over the phone, it just seemed appropriate that while Ellen was able, she could stay with us rather than in a series of hospital rooms. Mindful that her recuperation was going to take weeks, she might feel more comfortable having a house to call a home. Ellen agreed.
Ellen arrived two days before her scheduled hospital admission. The doctors had several tests they wanted run prior to beginning the process of transplantation. Mostly blood tests and the like. She didn’t need to be hospitalized for simple tests even if they were going to last two days. Ellen’s mother came with her. Ellen stayed for three weeks. Late that first night, being a night owl, I was up and so was Helen. We talked about many things. Mostly we talked about her history. I heard the story of a 31 year old mother of two children, a boy and a girl. Young, attractive, energetic, a teacher, friendly, articulate, and scared, very scared. She had leukemia now for three years. I can’t recall the exact figures or percentages but she was already ahead of the game - she was still alive. By the end of the second year, over 50% of persons with her disease die. By the end of the third year almost 90% are dead. By the end of five years, well…. And here she was - attempting to fight and stay alive.
Ellen discovered she had leukemia during one of her regular prenatal blood tests. The doctor couldn’t believe the results so he ran them again. It was then that the first of many decisions that had to be made. Should she continue to carry her child or abort? No one really knew what affect the combination of her leukemia and being pregnant might have. If she decided to carry the child, then medical treatment for her disease had to be postponed until delivery. The recommendation from the medical profession? Abort.
Ellen’s husband couldn’t take the disease or manage the situation. He divorced her. Many of her friends abandoned her. They didn’t know how to help. Many of those who stood by, told her that all she needed to do was turn her life over to Jesus and she would be healed. To Helen that sounded like bargaining. She had more integrity than that and therefore sought out a religious home that was at least more honest. She attended Inquirers’ Classes and was confirmed by her Bishop as an Episcopalian.
Ellen’s test results weren’t all that good and she was admitted the very next morning. Sometime during the night she wrote the following:
1/15/84
I should be tired, but I can’t sleep. I’ll have time to sleep later. I hope to get some “[hospital] passes” to at least walk outside. I love to feel the sun on my body with the wind slapping my face. At least [then] I know I’m alive. I’ll escape - simply leave - if I have to. ‘They,’ the keepers of the zoo, seem reasonable enough.
I have a few little stories - forest tales: I am the squirrel jumping from tree to tree. Always inside is the knowledge that I’ll suddenly fall, crashing into the earth in a crushed little heap. My other image is of myself in an airplane (my body) which is hurtling earthward at an increasing speed. I’m (the real me - not my body) trapped inside the plane unable to regain control, to get out in any safe way, watching it fall. It’s scary as hell. I wish I’d had that sudden, fatal, heart attack or that (some) racing car had suddenly struck me down. I’m not sure why I’m here. I miss my children; I feel so lost and lonely. I believe, somehow, that God is with me. I believe in his love, yet where is he? Why all this now? I have struggled for a meaning; there is nothing I can find acceptable. The doctor scared me. I know it’s becoming more aggressive in time. I can (and do) watch my counts. I know how the use of my medication has changed. I know what’s coming. I drink to release the anger - to tell the world to go get fucked. I always wonder where God is. I feel so lost and so alone - I’m so afraid of nothingness.
I’ve always said I wouldn’t live long. I told Sammie about 6 years ago that I’d never see 40. Coincidence? Did I know? Self-fulfilling prophecy? About 4-6 weeks before my diagnosis, Richard and I were fighting. I walked over toward him, looked at him and said, “maybe I’ll get leukemia and die, and we’ll both be out of all this shit!” Did I know on some level what was happening or was I so unhappy that I was willing to die to escape it? In short, did I cause it in some way? I did my little drug overdose - conned my way out of the hospital (we all knew I was (conning them) - no real secrets). I threatened to sign myself out Against Medical Advise. She (the psychiatrist) agreed to release me if I’d come see her at her office regularly. Later, maybe 6 months or a year, I bought some hose for my car - to hook up to the exhaust. It works. I checked it out. Supposedly painless. I’ve had it a long time - about 18 months. It’s just in my trunk.
Yet, I love my children. I miss them. This morning as I left the hospital, I wanted to hold them so bad - especially my daughter. She’s done well with our situation. Sometimes I think I’m crazy. Mostly I feel very inadequate. Jimmy can be a jerk - he’s certainly not indulgent. He can be neat. My feelings?: pick anyone off the street and you’d do better. At least she’d be healthy enough to have a future. It’s so hard to have a doctor look at you and say - if you have this baby, you’ll probably never see it enter school. I want to raise my children. I read Psalm 116 over and over. Almost every Sunday. I read it. I want to live - if I can’t have life on my terms (without all this hanging over me) I wish I were dead. I’m not dead - yet the illusion of immortality has been taken from me. My life span has been severely compressed. I hope I’m here in Baltimore to live. I’m afraid I’m here to die. Don’t let me die.
I had a dream once - I saw myself in a coffin. As the lid was being closed, my body either fell or leaped out. I couldn’t tell which. I’m not ready to die. Where is God? Why did he let this happen to me? Am I being punished? I feel that way - punished - at times. In all this I haven’t been able to ask God for help - not with the illness itself. If pushed, I feel like he could have helped a hell of a lot by my never getting this. One morning - maybe 6-9 months ago, I went to one of St. James’ healing services. Very small - mostly older women - (you wouldn’t believe the people who have offered to take me to the Pentecostal meetings). One woman told me how God had cast the demon of cancer out of her and she was healed. It was a format I could handle.
Why have I felt so inadequate? I think I make a neat friend. I don’t seem to do as well in close relationships, especially not with men. Certainly not my father or former husband. Jimmy? Who knows. I care a great deal. He doesn’t want to - but I’m the one who has had the least desirable behavior, as far as I know. Some things he knows - he must - I’ve lied. I don’t know. Right now that’s not as important. Later…. He certainly is in touch with me right now.
1570 blast - myleofibrosis is beginning. Lots of megakaryocytes. I cycle high in short time periods without medication. 13,000 to over 90,000 in 2 and a half weeks. I’m monitored more closely than initially. I read the section in your medical book. Nothing new. I used to go to the hospital’s medical library. I have a hematology book at home that I bought from L.S.U.’s Med School. The information never changes. I’m lucky as hell to be here now.
How do I feel? Angry. Desperate. Frustrated. I wanted a donor transplant very badly. I was depressed when it didn’t work out. That was either going to help me or kill me. This procedure has less chance to help (a cure), but also much less chance of killing me. That was the point of the other - I’d be out of what I often feel is “no man’s land.” Could I readjust to feeling “O.K.?” about my body? I don’t know. Sometimes I feel so crazy. Yet, I handle the responsibility of my life - my job, my children, my friends. I keep on doing all that I can. Hoping that tomorrow I can get up and do the same. Enough.
I want to thank you for letting me stay here. It’s so much nicer than an empty room somewhere. It’s all so frightening. Having a place to be with a “normal” life of its own is so very nice. Thank You.
Ellen.
In April, following her procedure, I received the following:
4/19/84
Dear Grady,
I’ve written this a dozen times mentally. I’ve rehearsed a few phone calls. Here goes.
I cannot tell you how much I appreciated your’s and Martha’s generosity. Baltimore was an intense and important experience for me. You two were certainly central in it. I’ve always (or recently) said I experience God through his people. Your hospitality was one of the miracles of my life. It made my stay easier for me. It helped me do it with a semblance of “style.” (Not necessarily classy, but with a style of its own.)
Since I’ve been home I’ve realized several things. How scared I really was. The more anxious I become, the more aggressive I get with my doctors. I have really missed Baltimore. It was a time of death and rebirth in a sense. I’m still not sure who I am or how I feel about myself now. I feel more relaxed and better about Helen than at any time since my diagnosis or in a very long time. I’ve behaved very well. I have stayed out of crowds. I’ve found that I have to pace myself and rest before I’m exhausted. I think I’m taking my body more seriously. I’m aware that what I do now may determine my future health. 1200 rads is a terrific amount of radiation. I’m being gentler with my body. I like the slower life-style. I like staying sober. I joke that I’m not even on the highway anymore much less in the fast lane. It feels good. It’s something I needed to do. I’m not interested in a lot of motion for the sake of motion. I’m tired a lot. Emotionally I’m weaker. I’m more content with my present - it feels nice. I intend to permanently moderate my drinking. It makes a big difference in how I feel. I hope I don’t become panicky over being alone. I’ve arranged to do a number of tasks at my home. I’ve had a tree removed, remaining trees pruned, an old shed removed, yard cleaned. Having my fence repaired is next. It doesn’t sound like much, but it was something I didn’t want to take care of. It went real well. I am doing better at being alone. Sometimes I enjoy it.
My counts [blood] are great. The Philadelphia chromosome is not back. Everything looks good. How long it will last, who knows? Maybe forever - my wish. My white counts are slightly elevated - 12000-14000 but I have several inflections hanging on. Planning on going to summer school and getting my Masters.
Ellen
Then, three months later I received this letter:
7/28/85
Dear Grady,
Enclosed is a picture of me. As you can see I no longer look like I have a crew cut. I was so glad you called me. You were so helpful and such a big part of the transplant - you and Martha were the best part. I am feeling better. It’s very hard to get excited about doing this a second time. I felt very scared - 50/50 is sobering. I like being alive now. But I am thinking less and less about the statistics and more and more about doing well. I was really centering on maybe dying, and I’m thinking lots about my children now, getting home to them. I plan to read more. I bought a jam box; a JVC AM/FM/Shortwave Stereo. Maybe the added calmness will help me. I do miss Baltimore. The nurses are nice - we’re getting acquainted..
August 8th on is important. What I do when I go home is major. I’m trying to set myself for at least 6 months.
Clearly doing a transplant in stable phase not only increases the chance of survival, but also decreases the chance of relapsing with leukemia.
I know so many people are praying for me. I also know there are no guarantees. I really do believe God will be with me in whatever [happens]. I really want to be well. At least not under imminent threat of death. Ultimately it will all be O. K. for all of us, whatever and however God works it all out in reconciliation. I guess that’s where I’m at - in the center of his love in the middle of all the good and bad. I just find it hard to believe that if I can crank my faith meter to X I’m rewarded with the jackpot of health and if I am 2 units away from X I’m punished with early death. I wish I had answers. I’m not even sure I have the right questions. I do trust that God will be with me come what may. Hopefully I can do what I need to.
Love,
Ellen
Ellen found a home - a church.
Ellen found the loving message of the resurrection.
Ellen challenged her faith.
Ellen’s struggle was not in accepting her death but to discover how to live again.
Ellen took her youngest child to his first day of school.
Ellen - A 20th Century Thomas. She experienced a deeper understanding of her faith response during a time of crisis as well as her celebration at being able to walk her six year old to his first day of school.
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