More Angels Gather – April 30, 2009

Craig has woken up so happy these last couple of days and full of a wonderful energy. I ask him each morning how his night was and what happened. Last night he said Kevin and Pleasant visited, but also “the girls” showed up, too. There were more people than he could name or that I could identify with questions. Baha’i friends from our area (the girls) who have passed were there: Janet Weaver, Deb Cunningham, Becky Huff, and Pearl McGill.

For the first time, Craig also saw his Dad. And lots of light.

I was teasing about him “partying” with the angels, but that didn’t seem to be the right word. He thought “communing” was more the nature of the experience.

On the one hand, all of this is good news. I’m glad there are people waiting to greet Craig with love, and that he’s headed for a positive place. On the other, it’s a little bittersweet…these are signs of him moving on.

The hospice nurse today said that Craig’s vital signs are still excellent, and there are no indications that his body is shutting down. Seeing the angels is not on a linear timeline…there is still no way of knowing how long Craig will stay here.

Love,

Susanne (and Craig)

The Angels Are Back Visiting – April 28, 2009

A few days ago, Craig invited the angels to come back again (they last visited March 30), and they have visited on some nights. He tells me that this time they are in color. Which then told me that last time they were in black and white–not a question I thought to ask! He still did not recognize anyone. Last night, however, his friends who have already passed on, Kevin Clavin and Pleasant Montgomery, visited him throughout the night. He seemed to think they were in regular clothes when I asked, but it was clear Craig thought this was a very mundane question about something so momentous and significant!

Here is a link to photos of these two friends with Craig. Kevin was a Baha'i and a coworker. Pleasant was the first person to tell Craig about the Baha'i Faith when he was a teenager, and he became a life-long friend.

www.claricomm.com/Accompanying_Angels.pdf

Craig said he came close to passing over and joining them, but there was still something stopping him. He felt that part of it was expecting an important visit today from his son David. They read through some of Craig’s journal entries about Dave over the years (I compiled them while working on Craig’s book), and they laughed, cried, and shared. So, very important time together (I stayed out of the way and worked upstairs).

Craig is sleeping much more and having moments of mental confusion. He struggles to remember how to paint and which silverware to use. He is mixing up names for me, his mother, his sister Nancy, and his eldest daughter Michelle. He greeted me recently with, “Good Morning, Mom!” Our communications are in shorthand, questions that take yes/no answers, and lots of guesswork. But, we are making it work as best as we can.

This afternoon was an emotional time again as our music therapist Ginny Kallay came to visit and played the song she composed to one of Craig’s poems, “Here Comes the Sun”. The words are below:

Here Comes the Sun

Coming full circle

Is a way to begin.

With the journey now started

The path is now cleared.

I can feel in my heart

A sense of new power.

Reclaiming myself

Moving on from the past.

I must now be patient

For the process to complete.

The newness and freshness

Takes time in the birthing.

~ Craig A. Farnsworth, April 24, 1998

How blessed we are by such talented people accompanying us!

Love,

Susanne (and Craig)

Photo Catchup Mid-March - April 2009

Believe it or not, this isn't all of the montages left to put together, but I'm pausing to post what I've done so far! A very full period of time...

Craig's Appreciation Party, March 8, 2009

www.claricomm.com/Appreciation_Party-1.pdf

www.claricomm.com/Appreciation_Party-2.pdf

www.claricomm.com/Appreciation_Party-3.pdf

www.claricomm.com/Appreciation_Party-4.pdf

www.claricomm.com/Appreciation_Party-5.pdf

Dave and Christina Farnsworth Wedding, March 29, 2009

www.claricomm.com/Dave_and_Christina_Wedding1.pdf

www.claricomm.com/Dave_and_Christina_Wedding2.pdf

www.claricomm.com/Karida_Wedding.pdf

Grandchildren

www.claricomm.com/Grandchildren_Mar_2009.pdf

Craig's Niece Holly

www.claricomm.com/Craig_and_Holly_Tolles.pdf

Caregivers Interacting with Craig

Faithful Companions

www.claricomm.com/Faithful_Companions_2008-2009.pdf

Hospice - Nurse

www.claricomm.com/Craig_and_Hospice_Nurse.pdf

Hospice - Music Therapy

www.claricomm.com/Craig_and_Music_Therapy.pdf

Hospice - Art Therapy

www.claricomm.com/Craig_and_Art_Therapy.pdf

Love,

Susanne

Dying with Your Eyes Wide Open – April 22, 2009

Craig’s physical condition went through changes over the last few days. He is experiencing difficulty with matching words with what is happening, so what comes out of his mouth often makes no sense and is quite different from what he is intending to say. He says he has some difficulty now in comprehending what is said as well, although that is less obvious to me. He is also now often forgetting names of those he knows well or giving people new names. I’m still waiting to see what he comes up with for me! Additionally, there is some decrease in his mobility.

On the soul side, we have finished the first draft of a book that contains Craig’s artwork and poetry from 1985 to 2000. We are still developing it, and plan to later add the artwork he is doing with Barbara, our hospice art therapist, but we are already very excited about its potential.

Recently Barbara mentioned that Craig was choosing to die with his “eyes wide open”. She cited the source of this phrase as Clarissa Pinkola Estés, Ph.D., in The Radiant Coat, Myths and Stories about the Crossing Between Life & Death. So, we ordered this book on CD and listened to it—fascinating material. I took a few scribbled notes of her insightful comments that occurred between the stories. I’m noting below some points that were most interesting and helpful for us:

- Death is our great companion and best friend who throughout our life nurtures, guides, doctors, and heals us, and at the end midwifes and transports us and is our accompanying guide to the next world, the next life

- We ally with Death when we enter it with our eyes wide open; Death meets us rather than reaches out to grab for us

- “Conscious Death”, the conscious crossing to the next world, requires these:

1. Clear Memory of where we are coming from, what we really are, and what the soul tasks are for us to do;

2. Clear Power to die in our own way and choose the quality of our mundane life and soul life in the process; refuse to allow others to interfere in our soul’s desire for restoration and healing

3. Clear Seeing about worldly attachments and illusions so it’s possible to let go of them; includes the gift of far seeing into the next world

4. Clear Knowing that helps with developing the intuition about the rightness of the process and time of leaving; a time of infinite joy when you see both this world and the next; it includes an increasing sense of inner and outer harmony

- Loving meditation and prayer helps us discover when Fate is ready to move us; we are chosen, we do not choose

- When the ego cries and grieves its perceived end, the result is emotions such as anger or denial, because the ego cannot go along for the journey

- Patience on this journey is required, as often the spirit is ready before the body is done

- Breathe forward to the next world, row to the next world, dance the next steps to being there, with eyes wide open have a clear birth and fly on

We have spent a couple of days thinking about these perspectives and discussing how they fit with our journey. I posed these questions to Craig, and to me as well (our responses are in the parentheses):

- Is he is in the mindset of trying to seek physical healing? (No, not anymore.)

- Are we using words these days that deny the possibility/probability of his passing? (Yes, at times.)

- Does he want to be in “Conscious Death” mode? (see below)

- Are we/he so attached to the creative process underway (music, painting, poetry) that this activity seems like a reason to stay here? (Maybe a little, but not really…it’s more like these are legacy projects)

Craig’s conclusion is that he wants to be in “Conscious Death” mode—Clear Memory, Clear Power, Clear Seeing, and Clear Knowing. I will shift, in response, the words that I’m using with him accordingly. Such an interesting adventure this all is…

Love,

Susanne (and Craig)

Physical Energy Dips; Spiritual Energy Soars – 4-15-09

For two weeks, Craig has been riding on a wave of energy and filled with creativity. We have matched up his collection of about 20 paintings from 1998-2000 with his poetry and have some kind of book creation underway with it (with the help of our art therapist from hospice). He’s newly created about 25 additional abstract drawings and paintings, many of them with small inserted eyes and smiles. He describes them as “fun” and “happy”. Our home is filled with music. We’ve given away about 60 of the CD’s we made for Craig’s honoring/funeral service, simply asking people to ignore the statement on the back about the CD being in honor of his passing and for them to enjoy the music!

Our home feels pulsing with love. Oh, there are moments…when the phone rings one too many times (no don’t use this comment as a reason to not call!), or my rest time is filled with difficult discussions with friends, or I start crying at a sentimental love song the music therapist sings, or there is some unexpected hassle to deal with. But then, tonight we watched the DVD movie “August Rush” about love and music, and Nik stopped serendipitously with daffodils and hugs, and life balances out. We were also blessed this past weekend with Craig’s family driving in from Pennsylvania with Easter dinner.

The last couple of days, Craig’s physical energy began to dip. He’s sleeping more and having a bit more difficulty walking. His speech has become harder to understand, much to his frustration. Sometimes I just cannot figure out what he is trying to say. For the first time, he is beginning to lose the names of those close to him. Today he asked me to read him the eulogy he wrote for friend Kevin Clavin, who died in 1994. Craig is confident Kevin will be one of his “spirit guides” on into the next world. Someone to show him where the bathroom and gas station are! One of his paintings today began to depict the re-opening of the next world to him. (But we have clear instructions from Craig that there is to be no “fussing” happening around him about the possibility of dying!)

I often wake in the middle of the night and tiptoe downstairs. I stand in Craig’s doorway and listen to him breathe. There’s such comfort in hearing that sound. I say a prayer for him, and then I tiptoe back to my own bed. And try to resume sleeping. I’m so very tired. But happy too. I said at support group last night that much to my surprise, the last four months of “funeral planning” have been among the best times in our marriage. Spending more time with family and friends, connecting with long-lost friends, reading love letters and journal entries, reflecting on the course of our relationship, gathering and playing Craig’s music, singing, enjoying photographs, creating art…so many gifts enjoyed together.

We are remembering that we recently passed the one-year anniversary of our attending a weekend for Exceptional Cancer Patients (ECAP) and family in Meadville, Pennsylvania (www.ecap-online.org). Craig clearly links the quality of his cancer journey to Bernie Siegel’s ECAP philosophy as outlined in Love, Medicine, and Miracles. Craig is clearly an Exceptional Man, too!

Love,

Susanne (and Craig)

Live or Die? April 9, 2009

Craig did not die in late March as he thought he would. On March 31, when he was fed up with everyone “fussing” about his potential passing, he declared he wasn’t going to die that week after all. The angels that had begun visiting him in his bedroom at night disappeared and haven’t returned since that day. He’s feeling better now that the steroid level is back up, so he looks good, has good appetite and energy levels, and is back walking some. However, he has been in an intense, frustrated, baffled struggle trying to figure out whether he is supposed to live or die. And if he is continuing to live, what does that look like and what is he supposed to be doing, anyway!

Over the weekend, the Reiki practitioners had him back thinking about living, and he began talking about the possibility of having a “spontaneous remission” (although he has a very difficult time remembering and saying the words!) On Monday, in response to his frustration, I asked Craig if it would be helpful to do a pro/con list for living and a second one for dying, which we did! His conclusion was that either choice would be potentially good… But, it did seem to free him up from the confusion in his head about it all. We maintain a calendar on a marker board in our living room. Every Monday is “SC” for study circle. Every Tuesday is “SG” for support group. Now, Craig has designated Wednesdays as “SR”—spontaneous remission focus days. A visitor then said Thursdays should be “SJ” – days for spontaneous joy!

Over the weekend, Craig had seemingly lost the ability to sing the short Baha’i healing prayer that he has sung regularly for 15 years. I didn’t realize how painful this was for Craig though until Ginny, the music therapist from hospice, joined us on Monday and he broke down crying in telling her about the inability to sing. She was able to cause a breakthrough and get him back able to remember the tune. He has been able since then to still sing it, sometimes with me singing along with him. So, he’s very happy.

Monday was also an emotional day as my daughter, Jennifer, began having contractions, with her baby not due until July 15th. The doctors got labor stopped, and after a night in the hospital, we are grateful to report she is back home and on bed rest for a few days. One silver lining - it was a thrill on Monday night to hear the baby’s heartbeat over the phone, as a fetal monitor was attached. One of the tests in our circumstances right now is that it’s virtually impossible for me to leave Craig to see Jen, as she and her husband Frank live near Fort Lauderdale, Florida, a 3-hour plane ride away, and she is also on travel restriction.

Our oncologist Dr. CJ Nock and his nurse Sandy Dye stopped by for a “home visit” on Tuesday. They had expected Craig to be on his deathbed by now and were amazed that he was up and wheeling himself around the house in his wheelchair and looking great. They continue to be special members of our team. Craig thinks CJ and I should write a book about some of our experiences. Time will tell… Kim, our hospice nurse, also checked Craig out yesterday, and all vital signs are normal.

So, I’m back grocery shopping and we are enjoying each and every day. We have been giving away Craig’s memorial music CD to visitors and simply asking people to enjoy the music/Craig’s singing and ignore the message on the back cover that says his soul has passed on! We are doing our best to trust that Craig is in God’s hands and that there is a larger plan at work for Craig that will manifest as we go through the next period of time. Is the tumor growing and spreading? Is it shrinking? Will Craig live for awhile longer? Will he die soon? Literally, God only knows…

Love, Susanne (and Craig)

Photo Catchup through Mid-March 2009

I seem to have finally got the website server setting fixed so I can now share photos with you, so enjoy! These are up to mid-March 2009.

www.claricomm.com/Craig&Family_Jan-Mar_2009-Slide_1.pdf

www.claricomm.com/Craig&Family_Jan-Mar_2009-Slide_2.pdf

www.claricomm.com/Friends_Jan-Mar_2009-Slide_1.pdf

www.claricomm.com/Friends_Jan-Mar_2009-Slide_2.pdf

www.claricomm.com/Friends_Jan-Mar_2009-Slide_3.pdf

www.claricomm.com/Healthcare_Providers_2008-2009.pdf

Susanne

Cornmeal Mush and Artwork – 4-5-09

Craig and I are developing a unique blend of fill-in-the-blank efforts and charades to accomplish communication as his speech deteriorates. He still understands most things and recognizes everyone, but the expression of thoughts is often a challenge. Friday morning he woke up thinking about a food from his childhood that he wanted me to fix but couldn’t tell me what it was. He was able to tell me that Bob Evans restaurants serve it, however. So, John Dare, our caregiver for the day, looked up the menu on the Internet and read it all to him until they figured out it was cornmeal mush he wanted! Having no idea it was a childhood comfort food, I’ve only served it about once in our marriage…make that now twice!

On Saturday morning, I began sorting through a pile of memorabilia that I’d set aside weeks ago. Included in the pile was a large portfolio that I hadn’t looked in at the time. It turned out to contain artwork that Craig did (and some I had done, too) during an Art as Prayer class taught in 1999-2000 by Barbara Trauger-Querry, who is now our hospice art therapist. We had forgotten about the class and the artwork, and the pieces are wonderful. Many of the paintings Craig did to illustrate poetry that he had written. It’s amazing to see that his style was very similar to what he is now doing left-handed in art therapy. Craig has gone through the paintings multiple times all weekend, savoring the fruit of his creative expression. I’ve re-read his poetry to him as well.

It’s been a quiet weekend for us, with lots of couple time. We had multiple visitors on Friday – Jon and Aunticlare Rezin from Los Angeles, Jennifer Rezin Botte and her daughter Gabrielle from Columbus, and Shamsi Modarai and boyfriend Rickie from Toledo. Jon (who works on the American Idol TV show) helped us with some of the production work on Craig’s new CD and spent time “jamming” with Craig on Friday. It delights Craig to see some of the young adults who grew up with his children or at youth conferences he staffed and who we have watched grow up into wonderful adults. We had no visitors Saturday. Two friends/practitioners did Reiki sessions with us today, and a neighbor dropped in briefly. Craig is now talking about appreciating having more quiet, meditative time again.

Craig woke up on Saturday having lost the partial use of his right leg that he did have. So, we have turned the steroid level that was ramping down back higher again. The more we keep the brain swelling down, the better his quality of life, so it just is the way it is.

I know everyone would like to see some photos – we are overdue to post some. We are having server problems. I’m working on it…

Love,

Susanne

Wedding, Sunshine, Music - 4-2-09

We have had an uplifting few days, and it’s time to share.

On Friday, Craig’s niece Holly Tolles drove over from Pennsylvania to spend time with Uncle Craig doing impromptu music together. She brought her flute and violin, and Craig used the Native American Rain Stick and various homemade instruments that we’ve put together for him. It was such a joy to hear them playing together.

On Saturday, Nik Tressler came and spent the day having a great time with Craig and to give me a respite day. I went out to John and Laurie Cunningham’s and was blessed with John creating a guided mediation to help me through the upcoming weeks/months. Laurie and I went shopping for stuffed animals as comfort tools, and we had a great time hanging out in Toys R Us hugging them.

On Sunday, Craig’s son Dave and Christina held their Baha’i wedding ceremony at our home. We had a few immediate family and close friends for a lovely and lighthearted celebration. Dave fulfilled on a promise to his wife by singing along with the Beatles' song "When I'm 64". Craig was asked to be the representative on behalf of the Spiritual Assembly of the Baha’is of Cleveland Heights, and he carefully printed his name with his left hand on the certificate. Craig was so happy to have this occasion happen and was moved to tears at the end. His energy was good throughout and even high enough for us to go out to dinner with everyone afterward. When we got home, there were surprise anonymous flowers in the mailbox, including a bunch of my favorites – daffodils.

The morning before the wedding, I was going through the paper and reading to Craig what I thought he’d been interested in hearing. We both ended up moved and in tears with columns from our favorite Plain Dealer columnists. The themes of family, cancer, death, and love between parents and children were very poignant for us that day, especially with the wedding coming up. Here are the links to the columns:

http://www.cleveland.com/brett/blog/index.ssf/2009/03/grandsons_birth_means_its_time.html

http://www.cleveland.com/schultz/blog/index.ssf/2009/03/the_nagging_fear_of_not_being.html

Friends Nahed and Philip Squires from Canada came in Sunday evening and the next morning, so we had fun catching up with them and putting them to work as well! Craig’s daughters Michelle and Leah and granddaughter Karida stayed through the end of Tuesday, so we were full up with love and joy.

One of the highlights of this time with the “girls” was music. Saturday evening Michelle and Karida stopped by before going to stay at Dave’s home for the night, and Karida and Grampa did a half hour jam session with various real and home-made instruments. They had a blast! On Tuesday, we had our first session with the hospice music therapist while “the girls” were all there. Leah and Michelle used our songbooks to sing songs remembered from childhood, Karida led the group in impromptu rhythm and kept redistributing the instruments, we all sang, and just had a relaxing fun time together.

We have finished producing the memorial/memento CD of Craig’s music that has been in progress for weeks. The intent was to have them available at the funeral with a donation box next to it to cover production costs. However, we are already so busy giving them away we may have to order more for the funeral! We are so grateful for the assistance of Craig’s daughter Michelle, neighbor Frank Rodgers, friend Joyce Ashman, and friend/music producer Jon Rezin with all the work to get it together.

Yesterday afternoon, Craig and I took advantage of the warm spring sunshine and drove to a local park that overlooks a beach and Lake Erie. We stayed for about an hour and a half eating Wendy’s chocolate Frosty’s and watching the water, birds, and kite flying. It really took us full circle, as we lived for the first year of our marriage in an apartment that overlooked the lake. We then went out to dinner, where Craig had what he called the “best liver and onions” he’d ever eaten! We had a great waiter who patiently read the menu to Craig, arranged for his meat to be cut up, and served us well. People held the doors open for us and helped to get Craig situated at the table with his wheelchair. Abundant helpfulness. So, it was a date night out for me, too!

On the physical side, Craig’s speech is getting more adventurous to decipher, but I’m doing reasonably well at it. We have stopped the shots that inhibit blood clots from forming and the antibiotic that he’s been on for 18 months. His sleeping pill has stopped as well. We raised the steroid dose way up for the wedding weekend to maximize Craig’s speech and energy. Now, though, he doesn’t want to be taking any more drugs than necessary, so we are ramping the steroids back down to a maintenance dose. They will help to prevent seizures, so he’ll likely keep taking some. Some days he is still steady with walking short distances; other days with fatigue and leg swelling he’s unsteadier. I’m definitely getting more sore muscles with trying to keep him balanced, needing more support on transfers, and more trips up and down the ramp in the wheelchair (instead of walking in and out of the house). I’m still swimming and doing Chi Gung to stay in shape. We have increased the caregiver hours somewhat, but not significantly yet.

Craig had been talking about being committed to dying this week, but when we all started focusing on that, he finally got exasperated on Tuesday and said he wasn’t going to after all. It will happen whenever it happens! He was then a little disconcerted and sad to discover that the angels didn’t show up in his bedroom that night as usual! So, we teased him about their feelings being hurt when he said he didn’t need them after all! People have been starting to give Craig commissions of things to accomplish in the next world on their behalf. He is also getting a bit exasperated with that, saying he needs time to get acclimated there first and see how it all works. He finally said on Tuesday that he at least will need to know where the gas station is before he can go to work!

So, we are openly talking about all that is going on. As usual, I’m doing more talking and Craig doing more listening :-). And, we are in peaceful space together.

Love,

Susanne