The Layers of Our Home – 3-29-09

Craig asked me this morning how I was. I responded that I felt a bit strange about it all and then proceeded to share with him a verbal tour of our home so he would understand. In the basement, his burial shroud was in the washing machine. On the next level up are the bags of adult diapers and protective gloves etc. that Hospice delivered to us on Friday. On the next level was the preparations for his son’s Baha’i wedding that happened at our home today (we’ll share more on that in another posting). Upstairs are the tools that I’m gathering to help me with the grieving process and all the final items and preparation efforts for his funeral. And, on the desk, the bills waiting to be paid. So many layers of experiences and emotions tied up in all these. Tears, fun, joy, sorrow, resistance, anger, exhaustion.

Bedtime,

Susanne

Medication Changes, 3-25-09

We consulted today with members of our medical advising team about Craig’s challenges with communicating and what medication adjustments might make sense. Our goal is for him to have the maximum possible ability to interact and communicate with me and with his children, who are arriving this weekend for a few days. So, at least for a time, we are significantly increasing Craig’s steroid level to attempt to reduce the brain swelling around the tumor. We are also eliminating his sleeping pill so that he freely sleeps and awakes as he needs to and hopefully has reduced grogginess and cloudy thinking.

Craig is still very focused on passing on to the next world in the near future. He has begun to sense the presence of souls gathering in the corner of his bedroom to accompany him there. Sometimes the steroids get him pretty lively though, so we’ll see what happens! He continues to be in a very peaceful inner state.

Love,

Susanne

p.s. It’s an interesting contrast for me today while Craig was so quiet. I edited the funeral program, attended a house foreclosure prevention seminar, and chased down financial stuff. My goal after tomorrow is to set aside most of the rest of the financial stuff until down the road aways. We’ve done the vital matters that needed Craig’s involvement. The taxes are signed, and the retirement funds handled. I’ve got an excellent advisory team in place – accountants, real estate agent, bankers, life insurance agents, and financial planner. And, we’ll work it all out step by step as needed.

Craig's Journey Reflections - March 23, 2009

Dear family and friends:

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

Transition from Outward to Inward Focus - March 19, 2008

Family and Friends:

Today was another transitional day in a week of gradual change. Craig shifted from adamantly insisting on continuing to go to Rehab two days a week to wanting to be home. So, today was his last day there with a staff who dearly love him. He noticed how much energy it was taking to go and be there all day and that he now needs to focus his energy inward and at home instead. Both of us shed tears today as we felt the loss of what was and knew that the next stage was arriving. Our services with in-home hospice and caregivers will now increase.

Craig is largely unable to read now, and he asks me each day to read to him of death, dying, and life after death. The Gathering Place has provided us with some wonderful, helpful books. We’ll delve into the Baha’i teachings on the topic as well. It’s a time of beginning to understand and experience what dying can be like. It’s scary, sad, and yet peaceful and hopeful as well…for both of us.

Last night Craig met with someone at The Gathering Place who helps to support those with advanced cancer. Today I met with a social worker from there. We are dealing with a swirl of emotions and changes and appreciating the support.

I’m exhausted…it’s bedtime.

Much love,

Susanne

Celebrating Life and Facing Death; 3-15-09

The gathering held last Sunday to celebrate Craig’s life, which many referred to as a “farewell party”, was absolutely wonderful. Generous friends created the occasion and hosted it, so Craig and I were able to attend simply as honored guests. We estimate over 200 people streamed in and out enjoying the delicious food, photographs, flowers, and socializing. At the same time, a continuous line of people approached Craig for a precious few minutes of connection. He started greeting friends at about 2:20, and the line finally finished up around 5 p.m. Craig’s employment with Radix Wire ended as of March 1st, so we joked about this also being his “retirement party”!

We felt that the diversity of the friends and family who came were beautifully representative of the unity Craig has dedicated himself to creating throughout his life. Bahá’ís, Christians, Muslims, Jews, and others I’m sure! Black, White, Hispanic, Asian, Iranian, French, and many others. Family came from various places. Friends came from Toastmasters, workplaces, marriage community, our neighborhood, Landmark Education, cancer support groups, and more. But the overall theme was simply LOVE! In abundance.

Craig slept for two hours after the event and recovered his energy over the following couple of days. He is still attending the all day therapy at Euclid Rehab on Tuesdays and Thursdays. He continues to lose speech and memory, but overall is very peaceful and still enjoys being with those he loves. One of the party visitors stayed with us and recorded Craig’s favorite prayers on his MP3 player, so that is wonderful for him now that reading is much more difficult. Another visitor this week was Barbara Trauger-Querry, a long-time friend, Bahá’í, and our art therapist with hospice. She got us both painting and exploring where we are right now…transitioning, growing, grieving… We met with our hospice spiritual care person, Aimee, for the first time as well, sharing with her the Bahá’í views on life after death, so she can support us with those.

It’s been a mixed week for me – the stress of dealing with a myriad of legal and financial tasks has been ever-present. If I had it to do over again, I’d have hired a financial planner when Craig first got sick. It’s definitely harder dealing with things now and wondering about all the possibilities for how to support myself once Craig’s disability income ceases. But, denial of the reality won’t make it go away! Friday was my 53nd birthday, and that was a peaceful, loving day. At the end of the day, Craig and I shared phrases from our love letters and had time together. Good news came this week from my daughter Jennifer that her baby is healthy, growing normally, and a GIRL! Giuliana (pron. Juliana) Alexa DeMaria, likely due around July 15th.

So, we are spending quality time with one another and those we love, both family and friends. When Craig rests, I do as well – at least briefly! – and then tackle my endless to-do lists until he awakes. We often sleep late and eat whenever we feel like it. Last night we watched the movie Fireproof, a powerful and moving drama about marriage. This afternoon we sat out in the driveway in the sunshine with a friend--spring has been early this year. And, we just take life one day at a time.

Love,

Susanne

The Zone of Receiving Divine Love – March 1, 2009

Throughout Craig’s illness, we have had the blessing at times of being with a wonderful woman who is both a medical intuitive and who also has the gift from God of deep connections to the spiritual world around us and insights about what is happening. Some of what she shared with us on February 17th may be of interest to you and may be of assistance to those of you feeling anxiety about us.

Julie encouraged us to recognize that Craig and I are still putting out a great deal of energy but that we need to be far more tuned into receiving the universal love that God provides, to be in a “Receiving Zone”. The more we are tuned into this force of love, the more cushioning there is from the “rawness” of this experience. She said she could see that Craig is focused on maintaining the steadfastness of his faith and that I’m focused on radiantly accepting or acquiescing with what is happening, but that it will help both of us to “shift our lens to receiving mode,” both love from God and from others. As we do this and don’t fight the current of the Will of God, we will learn more and be unified together. First comes love and then comes knowledge and truth. So, we have been dancing with this concept in the days since and starting to feel its effects. We invite you to include in your prayers that we be successful in making this shift in viewpoint.

Julie reminded us that the process of leaving this world can be like the transition stage of giving birth. Women in that stage are assured and prepared for birth and enthusiastic, but then have personality shifts and begin to swear, beg for drugs, and want to stop the process and check out of the hospital. Craig will have his private soul times of grappling with his fears, but this is part of the sacred work for him to do at this time. God’s Grace and support in waves will accompany his transition. She assured me that the grieving and emotional work of the last two years will help me to not fall apart or have extreme severity in the grieving time after Craig eventually passes. The descriptions I have been reading about being a widow have been a bit scary (!), so this was lovely reassurance to hear.

Julie encouraged us to breathe (something I keep stopping doing when it’s a bit too busy and the to-do list seems overwhelming!) and enjoy this goodly period, to take advantage of every moment. It’s going to all work out. The learning from this time will stay with me the rest of my life. People have been amazed at our calmness in planning Craig’s funeral over the last weeks – Julie said there is a shield around us in the process that is helping us do what needs to be done. [Working on projects together is also very much a part of the culture of our marriage!] As we travel this unfamiliar path of accompanying Craig while he lives and engages in the myriad of relationships that surround him, we have many wonderful helpers. And many offers of help. I have done an excellent job of asking for and receiving help, but I know I still have much growth to do in this area. As the to-do list overwhelms me at times, I can tell I sometimes need to expand my circle of helpers. [And I delegated a great team to handle Craig’s upcoming party!]

Of great assurance to us were Julie’s words that indicated all is going to come in the right order and that everything is in the right order for the two of us and everyone involved. She noted that it is extraordinary for her to see that in us there are “no strings that are hanging out, no strand is out of place”. Craig and I have been very committed with each other and with our family to ensure that what has needed to be said and done actually happens so that each relationship is “complete”. It was good to hear that we have done well at this.

In the middle of all of Julie’s wonderful spiritual assurances, she also always shares some of the very practical details that help balance my wellbeing, so I’m heading into a few dietary changes to help with managing the effect of the stress on my body. And on the emotional side, I’m preparing a keepsake memory book that will be helpful in the times to come. I had the blessing of a respite day recently at a dear friend’s home and spent much of the day re-reading the printed email messages from our time of courting. For Craig, Julie says for him to just keep eating whatever makes him happy!

Love,

Susanne