At times, Craig wishes he could communicate more directly with you. Yesterday, he requested that I type his words…and then edit them. The challenge with you seeing the edited version, is that you don’t get a sense of the difficulties. Craig is struggling to find the right words, mixing up words, getting dates wrong, and losing his train of thought mid-sentence. Sometimes he is frustrated, and sometimes we lighten the moments up with humor. And…he still wants you to hear his voice. So, below is the cleaned-up version of what’s on his mind to share:
“I’ve been reflecting lately that my feelings are very different in the three stages of this journey.
“The first part of the journey incorporated immense elation as I found that I was very hopeful that I would in fact have a long-term survival. The main reason was the 100% resection of the tumor, and although there were a few incidents with infection, there was no tumor recurrence for a year. There were big positives – one was the spiritual elation of this successful surgery, and there was the overall sense of getting to a new level of spiritual connection to God.
“The second part of the journey was a bit of a disappointment that in fact there was recurrence of the tumor, which made things in a very different light. I recognized immediately that recurrence decreased my longevity. As we started into this stage, there was a clear sense for myself that the surgery and infection associated with this phase was very, very hard and reduced my functionality. I could have chosen to die at that point. I made a conscious decision to stay around for awhile to finish handling some issues for both Susanne and my Mom. My sense is that both of those issues have now been handled, which I’m grateful for. In the fall of 2008, a further treatment started that initially looked positive. It was both an established type and experimental. Initially there were hopeful signs. However, a further MRI in February showed that the tumor was back, and I could tell from my symptoms that there was further spread. At that point, I suspended treatment.
“The third part of the journey has begun now that we have started meeting with hospice. Much more noble, quiet, and less frantic. I’ve found my body shifting to work more that direction. I’ve stopped going to the rehab center. It was no longer consistent with what I was trying to do. I’m still doing exercises at home on my own though. I’ve set up a music corner in my bedroom, and we have started doing art therapy, which is very wonderful. We have had two sessions of that. My active goal is to be as coherent as I can be and be here for March 29th when my son has a Bahá’í wedding ceremony planned (he had a civil ceremony 2 years ago). I have no established goals beyond then. What will happen after that I don’t know. I plan to remain active as best as I can and my focus is on the quality of my life. I’m spiritually preparing to embrace the journey to the next world.”
Love, Craig
And from Susanne again: Craig and I are floating in quite mellow space. He often spends time playing or listening to music in his new bedroom music corner. His wheelchair faces the window, which overlooks the woods. In the distance, he can see Lake Erie and loves to watch the sun set on the water.
Craig still welcomes individual friends and small groups, but turned down going to two Baha’i New Year’s parties this past weekend. We are home-focused and peaceful. Friday’s art therapy session had Craig drawing his soul as a bird headed towards an empty space depicting the “next world”. My painting showed ever-widening hearts and waves of peacefulness (interspersed with occasional jagged lines depicting all the hassle with finances!). Tonight we began a new study circle base on reading and discussing Reflections on the Life of the Spirit. (Our previous group finished the book last week after a year together and they voted to begin again and invite others to join!) What a blessing it is to have the accompaniment of such dear friends.
We so appreciate all the love, prayers, and friendship that surround us.
Love, Susanne
2 comments:
Dear Craig and Suzanne,
When I read through your journey together that you have so unselfishly shared, it brings to mind the following - which is the only way I can of to thank you both:
There is a Sufi story about a man who is so good that the angels ask God to give him the gift of miracles. God wisely tells them to ask him if that is what he would wish.
So the angels visit this good man and offer him first the gift of healing by hands, then the gift of conversion of souls, and lastly the gift of virtue. He refuses them all. They insist that he choose a gift or they will choose one for him. “Very well,” he replies. “I ask that I may do a great deal of good without ever knowing it.” The story ends this way:
The angels were perplexed. They took counsel and resolved upon the following plan: Every time the saint’s shadow fell behind him it would have the power to cure disease, soothe pain, and comfort sorrow. As he walked, behind him his shadow made arid paths green, caused withered plants to bloom, gave clear water to dried-up brooks, fresh color to pale children, and joy to unhappy men and women. The saint simply went about his daily life diffusing virtue as the stars diffuse light and the flower scent, without ever being aware of it. The people respecting his humility followed him silently, never speaking to him about his miracles. Soon they even forgot his name and called him “the Holy Shadow.”
Then the author, Rachel Naomi Remen, writes: It is comforting to think that we may be of help in ways that we don’t even realize.
I stumbled upon your blog and I just want you to know that it made me cry to picture all that you are going through. I am a Baha'i, too. I live in Harlingen, Texas. I will add my prayers to yours. Even if Craig doesn't make it to the wedding in person, he will surely be there in spirit. Either way, he will be there. Keep on trusting in Baha'u'llah!
--Leslie Wilder lwilder@harlingen.isd.tenet.edu
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