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Steve Philips passed on March 28, 2007 |
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This page is reverse chronology, that is, most recent listed first. April 29, 2007 Sheloshim for Steve Philips To dear family, friends and colleagues of Steve Philips / Chaim Yaakov, There will be a memorial gathering for Steve Philips to mark thirty days since his passing. We will gather at the Philips home for BAGELS & LOX BRUNCH* NOON SUNDAY APRIL 29, 2007 2740 7TH ST., BOULDER (SW CORNER OF N BOULDER PARK, OFF 9TH & ALPINE) *No food contributions needed. If you feel compelled to contribute something, please consider making a donation in Steve's honor, e.g., to the Boulder Aish Kodesh community or to the Cornelia de Lange Syndrome Foundation Traditionally, the passage of thirty days is celebrated with study. We will offer two opportunities for this: 1. We will make time for people to share (whether written or out loud) something of value that you learned from knowing Steve - something which has enriched your life or has made you a better person for having known him. We will have time for you to gather and record your thoughts while you are here, so no need to prepare. 2. We will all get a little taste of traditional Jewish study. We will set aside some time and have copies available to study some of Pirkei Avot (ancestral wisdom sayings) that Steve was studying. We will study in pairs for about 20 minutes and then report briefly to the group. Please RSVP to Caren@BoulderAishKodesh.org so we have a general count. Please put RSVP in the subject title. with love, Keren Or / Caren Philips UPDATE March 28, 2007 Steve (Chaim Yakov) Philips passed away this morning at 8:32 AM. May Hashem comfort Caren and all of us among the mourners of Zion and Jerusalem. Steve's funeral will be March 29th at 9:00 AM at Mountain View Cemetery, which is on the South Side of Kalmia Ave just before the JCC. Kalmia is one block (one light) North of Iris and 28th. Proceed East (right) for about quarter mile on the South side. You can park on Kalmia or at the JCC or within the cemetery. The plot is in the North East corner near the JCC. Please pass this information on to anyone who might like to know. UPDATE March 26, 2007 6 PM We are down to hours or a day. Please pray for an easy transition. UPDATE March 26, 2007 1AM Steve is holding steady where he is at today. No further decrease in body temperature or other signs along the dying process. (There are specific signs to look for, as explained by Hospice.) Breathing was getting very shallow yesterday; but was a little fuller today. Don’t want to interfere with his withdrawal but he has to be cared for so he will have a certain amount of stimulation no matter what. Took him outside on the deck today in the fresh air – I needed it. He slept. He is not taking in nutrients, only water and medication to keep him comfortable. No nutrients being given because digestive system has pretty much shut down. It went from a tiny bit since last Monday to nothing as of a couple of days ago. As Rabbi Hoffman pointed out, he is an endurance athlete, accustomed to pushing himself to the limit physically, on very little, so he is likely to keep hanging on awhile. He will go when he’s ready to go. Following Steve's lead, as always, as best we can. Write to Caren if you want to know about the trees that have been telling Steve's story. Amazing. UPDATE March 25, 2007 1AM I just spent about 28 hours straight with Steve. An intense, good Shabbat, plus a few hours. He is in the active dying process, progressing substantially today. It is an honor to be with him. He seems to be doing his work to let go of the body. It could be any time, really. Hours or days. Digestive system has been shutting down. Breathing shallow, other changes. He is and has been leaving the world in keeping with his way – slowly, steadily, thoroughly. It was hard for me to break away. I am happy for him though it will be so hard to go on without him. He has taught me a lot. This feels like a birth process. We birth into the body and then out of the body. We cry when we come into the body, into the world. When we leave, others cry for us. Strange. The way the body is turning itself off is a subtle, delicate dance. He is peaceful and comfortable. I am very grateful for this. Keren Or / Caren UPDATE March 22, 2007 Today Steve appears to have developed a pneumonia and is running a fever. This is in addition to yesterday's developments - please see . Things are moving along rapidly. He appears to be comfortable and peaceful as he proceeds slowly and steadily - as Steve always does - with this transition. Timing is unknown. Caren UPDATE March 21, 2007 Steve was scheduled to come home for a few hours on Monday March 19th, but instead went into a rapid decline, beginning at 2 a.m. The stomach infection is back for the fifth time and I have elected not to treat with antibiotics again. His digestive system seems to be shutting down and he cannot take in much food or water now. In recent weeks Steve has been more withdrawn, less responsive, dealing with stomach infection issues and increased muscle spasms all at the same time. Muscle spasms have been under control with change in medication but he is sleeping more as a result. I have consulted with Hospice from time to time since July and they are now actively involved. They are available 24/7 to family and friends at 303 449-7740 – Summit team. Today he was very peaceful. For further personal journal notes write to Caren at Caren@BoulderAishKodesh.org UPDATE March 7, 2007 After 5 courses of antibiotics, the stomach infection seems to be overcome. Muscle spasms have disappeared with changes in medication; but as a result of those medications, Steve seems to be sleeping more and is less responsive overall, even to me. We have seen this pattern before, with a period of increased lethargy and dozing a lot, followed by increased tolerance and more wakefulness followed by an eventual return of spasms. It feels like we have had a repeated pattern of slow progress 5 slow steps forward, then setbacks 10 steps back, and we only recover 4 steps forward, if that, so that we never catch up to where we were before. He does not seem to be rebounding from infections like he did before. Steve has had 10 courses of antibiotics for different conditions, such that I now consider these secondary conditions to be part of the underlying condition. I am no longer afraid that he will live for years in this condition, am no longer afraid that he will recover enough consciousness to suffer from an awareness of his condition. It is good that he is no longer miserable with the pain of the stomach infection and with spasms, but he also seems to be withdrawing more, is less present. I feel like we are in a dying process and so I see every day as a gift. I have brought Hospice in, but that does not mean that death is or is not imminent. They have people who come on way too late, and people who are with them for years. More services will be available to us and more expertise on the results of withdrawing this or that medication, how to enhance comfort, etc. He continues to receive excellent care at the nursing home, which I could not possibly provide to him, since he requires frequent doctor and nursing attention and multiple nursing assistants to attend to him, 24/7. I am able to visit and give him my full attention when I am there and he continues, overall, to be comforted by my presence. I take him outside frequently, on the deck or in the neighborhood. Keren Or / Caren UPDATE March 1, 2007 If you were at the tribute dinner and read Steve's amazing dvar Torah (his only spoken words since July 1 - 6 syllables), and someone you know would like a copy, write to Caren at Caren@BoulderAishKodesh.org UPDATE February 8, 2007 Not such good news this week. It has been a difficult week and we may be getting toward “the end of the line” here. Major spasms Monday, minor ones Tuesday but more leg muscle contraction; extra dose of meds given both days and there was an immediate lessening of symptoms. A stomach infection that will be diagnosed tomorrow, expected to be a repeat of what he had twice before. Comfort and contagion have necessitated treatment of last several infections. Toe infection - very painful - now healed. Stomach infections – this may be the third – very contagious and uncomfortable and must be treated. Acupuncture this week has not been so helpful. Little to no results with Ambien trial today, but we will probably try again when Steve is feeling better. May try some other meds for contractions or increase dose once again of current med, but it is not expected to fix the problem only lessen it - at best. The "on the ground, day to day" decisions are certainly different from what one might imagine theoretically or from afar. Please read last update as well. Caren UPDATE 2-1-07 Steve continues to make slow progress. He had his trach tubes taken out over a week ago, and he is breathing through his nose with ease. After a week of recovery, he is once again able to swallow small amounts. With the tubes removed, he is now able to articulate some sounds. He continues to enjoy going outside, whenever the weather permits, looking around a bit and taking deep breaths of fresh air. He continues to smile when I hug and kiss him. Two weekly acupuncture treatments (one in the facility and one outside, to which he travels on Special Transit) are helping a bit with muscle contractions. Spasms lead to contractions and this needs a lot of work. Verbal and physical cues and therapies are helpful, natural and traditional medications may be helping, but it is difficult. He has overcome two infections that were causing some pain and discomfort. Antibiotics for one (infected toe) led to the other (highly contagious stomach infection) and a second round of both antibiotics were needed. Many suggestions for treatment are initiated by me and it is so important to be a constant and vigilant advocate. The staff at Life Care are very caring and kind. And one learns over time who are the “can-do” and who are the “can’t –do” administrators, how things get done, and how many times you have to ask before they do. There have been some recent miracles, but if you want to know more about that, you’ll have to email me, because some people don’t see or don’t want to see the miracles in everyday life. Thanks for your visits, for your support and your prayers and for learning how to make your own lives better by virtue of being witness to this experience. I truly appreciate what each person is able to contribute and do not expect any more from you. I am also grateful for emails and phone calls. By appreciating your own lives and relationships every day, and by treating your loved ones with kindness and respect for the uniqueness of each person’s path, as Steve always did since I’ve known him, you are making a contribution to his healing and to healing the world. In this time I am both letting go and grieving, while continuing to make every effort to help Steve make as full a recovery as possible. It is a time of living daily paradox, a time of deep love, a time of growth, a time of living the pain and beauty of being human, of trying to maintain acceptance and faith in the tests that Hashem has chosen to give us, a time of trying to do the best I can to meet those daily tests. And I could not do it without your friendship and support, prayers and well wishes. As Steve always used to say, to great and small challenges, “We’ll just do the best we can.” Indeed it is all we can do. And in that way we can live without regrets, knowing that we did our best. Always, Caren UPDATE 12-20-06 CHAIM YAAKOV BEN RAIZEL / STEVE PHILIPS We are now at 5 ½ months. It has been a long time since I’ve written, for many reasons. Steve is no longer in a coma, has been and still is in what is considered a vegetative state, at best a minimally conscious state. Whether this can progress further is unknown. There has been progress, but not necessarily linear objectively significant progress. He has been breathing on his own for about 3 months now. He is responsive to my and nurse’s directions to relax arms and legs, with my touch and voice. He has a trach, and we are moving toward removing it. He is still fed through a stomach tube. He can hold his head up and move his head voluntarily. He can clear his throat and has a strong cough. He can swallow small amounts of pureed food and drink, though sometimes he may hold it in his mouth awhile before swallowing and there is a risk of aspiration (breathing into lungs). We need to work on that before removing the trach. He does not track with his eyes usually, but sometimes he will focus on a person for a long time when you get in his face and talk to him. This past Thursday he tracked the nurse all around the room. At times he has turned his head when his name is called but usually he just notices the sound and the presence of people without turning his head. He is happy when I am there and when his men’s group comes and when he is “cycling” on bike pedals (I push the pedals for him, to stretch out his legs and to give him the experience of that familiar motion), evidenced by a more contented look or actual smiles. When I hug him around his back for awhile, he smiles. Two days ago the nurses’ aides said they were joking and laughing with each other in his presence and he smiled. I took him for a ride in the car, along his old bikes routes, about a month ago. It took several people to load him into the front seat because he cannot voluntarily move arms and legs. We rode along his old bike routes and he had sustained smiles. I want to take him for more rides, especially on sunny cold days. When the weather is nice I wheel him in the wheelchair around the neighborhood and he returns very contented and relaxed. He went through a period of increased muscle contractions and spasms and we adjusted his medication. For a few days he was more sedated, dozing a lot and sleeping longer. But he seems to have adjusted and is more awake and is having fewer spasms. We have started private, weekly acupuncture treatments and this is helping with muscle contractions. We also did a “Bodytalk” healing session this past Thursday. In the afternoon, after we returned from a walk in the brisk air, he was breathing strongly through his nose, and then he vocalized unformed sound. I covered his trach and we could hear it. Once, and then again. Several nurses’ aides were standing behind his chair, waiting to transfer him back to bed, when it happened. It looked like the final scene in the Wizard of Oz with them peering over from behind him, listening. That same day he brought his shoulders (as well as head) up off the bed, as if trying to sit up, so I sat him up twice in the bed. He also fell out of the bed that day. A scary occurrence. We now keep the bed at the lowest level, with pads on the floor, when no one is with him. He has lost full range of movement in joints of wrists, hands and knees and this is heartbreaking but potentially reversible. We continue to work with him on range of motion but with decrease in therapy (cut off by insurance), belated introduction of splints and other factors, this is a challenge. Help is needed with this and is not so hard to do. Gentle stretching and starting from where he is, even exaggerating where he is and then stretching out from there, helps. He will grimace if it starts to hurt. He needs a new wheelchair, as he got some bruising and also breaks out into a sweat from being uncomfortable in current chair after awhile, limiting the time he can spend in the current chair. Since he only sweats when in an uncomfortable position, it seems that he is making an effort (though unsuccessful) to change position. When he is assisted to change position, he experiences relief. All of this seems to indicate increased awareness. I pray and ask for your prayers for relief from these terrible circumstances, and specifically for increased movement in joints. Please know that when I am unable to pray, simply unable to ask, and must just be present with what is going on, showing up to do what is needed in the moment, I feel the presence of the thoughts and prayers of all of you. When I can only be in the silent empty space of not-knowing, I can feel the kli (vessel) that you create, surrounding me and allowing me to be in the emptiness inside, suspended or crying out or just being. And when I receive emails from people telling me they are still holding us in their thoughts, still praying every day, still saying tehillim (psalms), whatever it may be, then I know that it is not just my imagination. Many, many thanks to the people who continue to visit, to those who were willing to come when I took a much-needed vacation over Thanksgiving. Please write and let me know you are still there. If a number of people would be willing to come once every 2, or 3 or even 4 weeks, it would be very healing to Steve to have more stimulation. Mornings and evenings are best, but let me know what works for you and whether you would like me to be there with you. To just sit with him, to read, to sing, to pray, to do some stretching, whatever you are willing to do. If you can make that commitment, please email me at Caren@BoulderAishKodesh.org Many many blessings to you, for happiness, for Light illuminating the darkest places, until we can truly see the good in all things past, present and future. With much love, Keren Or October 3 UPDATE Chaim Yaakov ben Raizel - Steve Philips Crazy and needing your help, especially with visiting - see next paragraph…. If I haven’t heard from you lately, PLEASE write or call and let me know you’re there. Tell me your life is good (or bad and I’ll cry with you) and tell me you’re keeping us in mind. UPDATES ARE ALWAYS ON www.boulderaishkodesh.org including old entries; just scroll down to first entry-"Refua Shlema Steve Philips Update" Please forward this email to others who you think would be interested; I depend on it; and if this is the first email you've gotten it's because I thought you were getting word from other people. More prayers are needed. They truly make a difference. AND, if you can, Visitor help is needed because ... I’ve got to get away a little bit! Going crazy OR going to L.A. Oct 9-11 MTW and need visitors while I’m gone. Also hoping to go to N.Y. over Thanksgiving Wed. Nov. 21-Sun Nov. 26. Can people commit to visiting? Please email me at Caren@BoulderAishKodesh.org and I’ll make up a schedule. IF you don’t hear back in time, call me on cell. (Feel free to visit WITH me, before I go, if that would make you feel more comfortable.) If possible, we could meet as a group and I can give you some guidelines on massage, stretching (he can be pretty contracted and you can’t push it too far). Or you can take him out on the deck in wheelchair – I try to do that daily. Or you can just read, sing, pray, whatever. There are visitor guidelines and a notebook to write in. And more guidelines below. Really, don’t wait ‘til I’m going away. Visits are great anytime; it’s been pretty quiet over the last month but visitors are needed. If possible, drop me an email about when you’re thinking of going. Anyone with bodywork skills is also so needed to pitch in and volunteer – anything that can be adapted to the situation – please talk to me and we’ll go together or at least talk about it. If you’d rather visit along with me, let me know. ‘JUST THE FACTS’ CATCH UP/RE-CAP : A little over 3 months ago, on July 1, Steve suffered cardiac arrest while biking with a friend up Olde Stage Road. He had just finished a strong Ride the Rockies cycling hundreds of miles through the mountains and over passes, and a strong Bolder Boulder 10 K run. He was rested and recovered. Though he had CPR for 20 minutes before paramedics arrived, he suffered lack of oxygen and lack of blood flow to the brain and he is severely brain damaged. It is worse than a traumatic brain injury because the damage affects the whole brain, like having many strokes. He was in a coma for about a month and is now considered to be in a vegetative state. His prognosis is poor. CURRENT PLAN: As of a few days ago, Kaiser is no longer paying for room and board. B’H, we have long term care insurance at Steve’s insistence, which will pick that part up (with a little delay in timing, however). Working on weaning Steve from most drugs he’s on, and putting him on Mannatech glyconutrients and related products with the hope that cell regeneration can take place. And if not, perhaps the end will come thereafter. A last ditch effort. A resignation. Hope. All at once. PROGRESS : has been limited but it is there, and also possibly some setbacks. Medically he’s in a persistent vegetative state and maybe not beyond that. He has fewer facial expressions these days, less tracking with eyes, after a time of increase, has been getting more contracted in arm and leg muscles though lately he is more relaxed. He is off oxygen and breathing on his own, holding head up a bit better, lifting head from prone position, responsive to smells and taste; one person can hold him up in sitting position instead of two, smiles sometimes but less often, may perk up a bit at voices and other familiar things. CAREN'S UPDATE: OK, fine. Call me crazy. I must be. I’m still in love. With a guy who can’t speak, who has to be transported from bed to wheelchair by 4 people. I cry over what he was, the beautiful photo just sent by his twin brother. OK, so I married an athlete and this is what I get and what he gets for being so healthy and fit. It happens. Death happens. Disability happens. And I talk to him, just sit with him, sing to him, praise him and his caretakers for his more relaxed hands, play music for him, pray out loud with him, comb his hair, massage his head. At moments he seems to pay closer attention, head suddenly going up and down rhythmically when I sing his favorite niggun. Impossible?! I must be in love with my own projection, right? But than Rabbi Hoffman says “Hah, what else is there!?” Truly, though, I’m not the only one who thinks there is a presence there. It challenges all my prior notions of what is a life worth living. It helps when Steve is dressed and sitting up, rather than lying curled up in bed. (But then that’s true of all of us.) Getting him to hold his head in alignment with his spine is a challenge, but today he relaxed back onto a foam neck roll and let me brush his teeth. And I could listen to love songs on the way home and feel no loss, that I’ve got my honey. Weird. But this is also hellish at times. It was so hard to go into the new year knowing that what Hashem already has granted me is the loss of my husband as he was. Finding some anger, getting depressed. Not wanting to talk to anyone. Refusing hugs. Resting in the restfulness of the not-doing of depression. But I can’t write when I get into that state of withdrawal. Or when I’m so busy that even time for myself seems to be part of the rushing around. The agony of wondering what his wishes are, whether his wishes as expressed while he was healthy are the same now. Wondering how I can have the chutzpah to think I can continue on, contrary to those expressed wishes. Wondering how I can have the chutzpah to think I have the right to make a life and death decision. Finding a new balance in the not-knowing. It’s a stormy sea and sometimes there’s no place to stand. So I’m trying to take my friend’s advice to let waves wash over me instead of trying to ride them and think I can see what’s ahead. We thank Hashem every day for making the earth-places on top of the waters, that enable to walk. Each ones of those blessings has tearfully new meanings now. Feeling like I can’t take anymore. Wanting to just get on with my life sometimes. Dipping down into lower and lower levels of grief and loss. Hearing different voices – including those who want me to just get it over with, and help him end his life because “that’s what he wanted.” I’ve had “words” with Hashem lately: “I don’t want to talk to You. You’ve been very mean to me lately. I have nothing to say to You.” And then I realize that that itself IS a conversation with Hashem. The death of a friend put me over the top for several days. Crying and writing sad poems. Read the newspaper to relax??!! Violence and cruelty juxtaposes itself against frivolous fun and invitations to buy stuff. What IS this world? OK, tonight I’m “ bargaining” - Hashem, please give me some clear signs, if You want him, take him; and if he wants to go, let him go; or show me what to do here, give me some guidance. I’ll keep praising You and talking to You and please give me some guidance here. And talking to Steve today, asking him to communicate with me through thoughts or dreams, whether he wishes to leave this world, what I can do to help him. I am very grateful to kind words and support including the people who let me reject their hugs and offers to talk, and then tell me they have more when I’m ready. The people who happen along at the right time. (E.g., we couldn’t find any Jews to hear the Shofar at the nursing home, then the only other Jew shows up – her first time out on the deck – and David blew the shofar again. E.g., the old colleague/mentor who belatedly got the news only because I ran into her at the supermarket –“I never come to this supermarket,” she said. “Of course,” I said. You came here to run into me.” And on and on…) SO come and see what you think. Am I nuts? Whatever you find, I’m sure you’ll agree I am. Please contact Caren for visiting information. TIMES TO VISIT: Mid-afternoon to 6 p.m. are good, as therapies are in a.m. or early p.m. Steve starts winding down by 7 p.m. and goes to sleep at about 8 p.m. If you can email me at Caren@BoulderAishKodesh.org to let me know when you expect to visit. AND AT THE END OF YOUR VISIT, PLEASE WRITE DOWN WHAT YOU DID AND YOUR OBSERVATIONS IN THE NOTEBOOK, which is so important to tracking any progress, and so visitors can rotate tasks. SUGGESTIONS FOR VISITING: Ask at the desk for him to be put in wheel chair (they’ll usually get it done within 15 minutes) and take him out on deck on second floor. I try to get him out every day, as he loves the outdoors. Jacket, vest, more blankets in closet. CDs and tapes are in a drawer by the sink, as are books. Photos are on walls, in drawers, in closet. Feel free to look around for what you need, to read to him, to put his distance glasses on him, or to remove his glasses if you want to get close in order to try to get him to focus on you. It’s good to put a new CD on just before you leave. Pray out loud, sing, or sit quietly and meditate. Do what feels right to you at the time. It will vary. Help is needed with range of motion and physical massage, but please check with me first before attempting that. Caren UPDATE Steve Philips September 13, 2006 Chaim Yaakov ben Raizel Steve. Steve went outdoors today! It was the first time in 2 ½ months, and he loves the outdoors. He still has his bike tan, usually keeps it through the winter. We wheeled him outside on the deck in a big recliner with wheels, some portable oxygen in tow. Until we get a suitable wheelchair that meets all his needs, we’ll use Big Blue, his stretch limo. It takes several people to transfer him from bed to chair. Two of us dressed him in his first real clothing – his breathable travel shirt, shorts and a cap. He enjoyed the beautiful weather, breeze, flowers and sunshine. We snapped some photos, though we couldn’t get a smile out of him, and he needs a shave. He’s still my handsome honey. I hope to have several photos, past and present, online soon. Today I worked with him a lot to stretch out his legs. His hands were much more relaxed today than they usually are, so I would call that progress. Caren. The drive to Longmont is beautiful and I can go a variety of ways. As often as possible I take roads through open country of fields and animals and barns - and lots of cyclists. Ironically, I’m retracing Steve’s old bike routes – Nelson Road, Hygiene, Lyons. It is calming to drive through open green lands, and spiritually uplifting to see clouds gathering for sunsets over the mountains. There’s a field of sunflowers just north of where he is. I have 6 sunflowers in my garden and just those are enough to make you smile. A whole field is pure joy and laughter. I made the decision today not to continue teaching regular classes right now, in order to spend more time with Steve, to help give him every chance of making progress. Fewer hours per week working with adults and/or some substitute teaching will be more appropriate. And I need more positive energy around me right now. Things are hard enough without the stress of resistant kids, lesson plans and grading. Advocacy/insurance/Steve’s wishes. Kaiser has approved him for full payment for another week, but the case manager told me it will be a weekly question, and they are likely to stop paying for room and board soon. This is why I wanted him in Longmont – because he will be able to stay even after Kaiser cuts off his room and board payments. We have long term care insurance and Steve was also approved for social security disability benefits, although that doesn’t start for another 3 months. So I will continue advocating for Kaiser paying for as long as possible, however I can. Their criteria for rehab doesn’t fit brain injury patients. There may be a gap in resources but we’ll just do the best we can with that. It’s interesting to reflect back now that when we got long term care insurance I told Steve that I was afraid that you could stay around for a long time with that kind of coverage, that it could prove to be inconsistent with our living wills, but Steve wanted it and now he has it. An interesting paradox regarding intent. Daily miracles continue to be revealed. * Like the checker at the grocery store, two days ago. Why do they have to ask you how you are? I said, ‘you don’t want to know.’ She said, “I could pray for you.” So I told her Steve’s Hebrew name and told her what was going on and what was needed. She said, “Consider it done. I’m a prayer warrior.” I was checked out at the grocery store by a prayer warrior - ?! * A week ago a friend and I both had dreams the same morning that Steve was talking. * Today, I went to buy some fresh ground coffee, for Steve to smell. One of my favorites, Sumatra, did the trick. The side benefit is having some nice coffee for me. I almost bought another kind, but I told the guy what I was after and why. When I was about to leave, he said “have a good day.” I didn’t answer. I just told him the situation. Why do people take such things so lightly? But then he said it again, so I said, “Look, I’m really now having good days right now. You have a good day for me.” Maybe he will see his day differently because of that. But really it’s not true. I had a great day. * Yesterday I could feel my neck and jaw tensing up when the facility case manager told me they would be discussing Kaiser coverage at their Wednesday meeting. I only saw Steve for a few minutes, after my meeting, and I was discouraged during that short space of time and felt like I am kidding myself and I cried myself to sleep. But today, I wasn’t stressed out at all, though I arrived to see Steve while the meeting was taking place. How can that be? That’s not like me. I used to say, if you can worry, do. (“Worry” encompassing a whole range of obsessive thoughts about things you can’t do anything about. And really just an acknowledgement that we do it anyway, so don’t deny it.) * And, I don’t think I mentioned that when Sean was here, he told me he is composing a piece of music dedicated to Steve! Then he asked me to write some lyrics. I said I didn’t know how to write lyrics. What was the tune? He said to write and he’d make it fit. I’ve written some poetry but not lyrics. Yeah, right. But that night, when I tried to go to sleep, I sat up instead, and I wrote lyrics. Two days later I put them on the computer and only changed a couple of words. * And the nurse today who said she was so touched by us, that she had a dream last night, and Steve and I were laughing a lot together. How did she know how much we laughed and joked? It was my job to make Steve smile. And it’s still my job, but I didn’t do so well on the smile scale today. But I can get him to pucker when I kiss his lips a couple of times - ! So that’s my partial list of miracles. Not to mention breathing, eating, walking, moving. I find myself staring at people negotiating in wheelchairs, thinking how wonderful it would be if Steve could do that. Then I realize I’m staring and they won’t know that it’s because I’m in awe of them. Lyrics. OK, here is my love song to Steve: I LOVE YOU WHEREVER YOU ARE - Dedicated to the refua shelema of Chaim Yaakov ben Raizel (Stephen Philips) Life was so easy with you Even the hard things were easy So good I even tried to sabotage This can’t be real It can’t last It’s too good to be true. I loved that look you gave me Staring, smiling with those loving eyes You gave me everything I wanted I made you smile I made you laugh I loved just being with you. Are you still there? I love you wherever you are And if you’re not there Where are you? As long as a piece of you is there I will be with you. So easy to be with you that I couldn’t know Our connection was so deep Two halves of a whole, one soul Until there were no words Just the waiting for A heart that ceased to beat. These days I can’t sleep at night Wondering if you’ll make it through Still wondering if I can be good to you If it matters If you can know I just want to be there for you. Are you still there? I love you wherever you are And if you’re not there Where are you? As long as a piece of you is there I will hope and fear. The world is such a strange place now Heaven, hell and we’re all in school Finding the blessings in the hard times The prayers of friends Holding the vessel In which to cry over you – and heal Many things were shown to me And still I don’t know a thing You don’t know til you’re there What you’re going to do Must be a dream But it’s real – what is real? Are you still there? I love you wherever you are And if you’re not there Where are you? And if you choose to leave this world I must go on alone – but how? What is asked of us don’t seem to end We’re asked to go beyond ourselves To the unimaginable and find the strength Or break apart But a broken heart Can let the Light in. I just love to be with you I still feel your sweetness there When I’m with you I don’t want to leave you When I’m not there I miss you I still love to be with you. Are you still there? I love you wherever you are And if you’re not there Where are you? After all these years I’m still in love I will be with you. -from your loving wife, Keren Or (Caren Philips) Caren Subject: UPDATE SEPT. 6 Steve Philips - Chaim Yaakov ben Raizel I'm also sending this as an attached word document. All of a sudden, I can't paste a document into this email without the right margin running going on and on, off he page UPDATE SEPT. 6 Steve Philips - Chaim Yaakov ben Raizel For current and old postings, see boulderaishkodesh.org Hoping to have a link to some photos soon, too. Steve has been at Life Care of Longmont since last Thursday, August 31, for skilled nursing care. The doctor and therapists I’ve met so far have been great. They are very kind and caring people. He has three consistent nurses, with only little variation. Today was a very good day… SEPT. 6 Last Thursday and Friday, the day of the move and the following day, Steve was very alert. For the next four days, he slept a lot. Today was a very good day. He was alert during my visit of several hours. I was able to get him to focus on me by getting right in front of his face, and then he would track a little with his eyes. I also used flowers several times, to get his attention and to get him to focus and follow the different colors, followed by photos. The therapists came in and got him sitting up, with us supporting him and holding his head. They got him to lean on one arm and then the other. When leaning back he could hold his head up (as he’s been lifting his head and turning it side to side when he’s lying down). My goal has been to get him outside and hopefully it will happen tomorrow morning, as they came up with an appropriate wheelchair today. Since last Thursday, at the hospital just prior to the move and continuing since then, Steve has been repositioning himself over time in order to look toward the light of the window. He now has a view of green and blue sky (unlike the gray concrete at the Denver hospital). I played music for him several times. Days like this give me hope. I am adjusting to this new reality, getting my life more and more organized in order to accomplish a myriad of tasks. SUGGESTIONS FOR VISITING: CDs and tapes are in a drawer by the sink, as are books. Photos are in a clear folder in the room, with more to be stored in the drawer as soon as I bring them. Feel free to look around for what you need, to read to him, to put his distance glasses on him, or to remove his glasses if you want to get close in order to try to get him to focus on you. It’s good to put a new CD on just before you leave. Pray out loud, sing, or sit quietly and meditate. Do what feels right to you at the time. It will vary. TIMES TO VISIT: Mid-afternoon to 7 p.m. are good, as therapies are in a.m. or early p.m. Steve goes to sleep at about 8 p.m. Tuesdays, Thursdays and Saturdays are especially good as I can’t visit during the day on those days, so it helps to know that someone else is there. If you can email me at Caren@BoulderAishKodesh.org to let me know when you expect to visit. AND AT THE END OF YOUR VISIT, PLEASE WRITE DOWN YOUR OBSERVATIONS IN THE NOTEBOOK, which is so important to tracking Steve’s progress. Your prayers and support are working. That’s how he got to Longmont! with so much love, Keren Or / Caren UPDATE evening of August 30, 2006 Chaim Yaakov ben Raizel (Steve Philips) Steve moves to Longmont tomorrow! Our son Erik will be there before, following behind the transport, and on arrival, G-d willing. Baruch Hashem, I am so grateful. Thank you for all your prayers and support. They were heard. You know your life has changed when you’re happy your husband is going to a nursing home! Actually that’s not quite accurate. I’m ecstatic. Unbelievable. Just a few days ago I had a moment of ‘look what my life has become’ – after driving all the way to Denver in the evening, only to find Steve asleep, and he wouldn’t wake up for me. And the thoughts preceding panic (but the panic didn't come), noticing thoughts of how he used to make everything ok whenever I was upset by something. And now who is going to do that for me? Me. I’d been getting worn down lately, it’s true. It didn’t seem like much was happening with him. Investigating two different insurance plans that we have, trying to prepare myself so as not to be surprised. Worrying about finances and resolving those issues. Trying to do so much. But when there’s more to do, more gets done even if not everything gets done right away. Any little thing that I do for the first time is an opportunity for success and mastery. Some days I pray more with intention and focused energy than I do with words. Some days just making the words come out when I don’t feel it carries me along. I am very grateful for all the blessings in my life. And there are so many. Steve is on his own time schedule, his own path. Just as he respected and encouraged mine, I want to be there for him. He took care of me. Now it’s pay back time. Whatever presence he has in his physical form or elsewhere, I want to be there for him and with him. With the help of so many friends and family, all I can do is keep showing up and doing what is needed, facing whatever comes. Steve’s meds were adjusted again today by the neurologist. The new doctor should be able to follow the plan. Steve continues to progress slowly and in small ways. He perks up at visitors or hearing a voice on the telephone when I hold it up to his ear. He’s now moving his right leg a lot. This evening, we found him angled toward the sun. His nurse said he kept repositioning himself today, to look out the window toward the light. I long to take him outdoors. He seems content, sometimes smiles. Opens his mouth as if to speak. Has an old nervous habit back. There is such sweetness there. Opening eyes and looking around with a sense of wonder. And he’s looking good. This past weekend was our tenth wedding anniversary. I am glad we made it. The circumstances don’t matter ‘Reality’ has adjusted a lot in two months. Tonight I brought a little CD player and put one headphone on his left ear and one on my right, and played James Taylor’s “There’s Something in the Way She Moves.” It is so appropriate to us right now. We never had a song, but I think that’s our song now. Click here for lyrics May each and every one of you be blessed with continued health, and love in your family and between friends, and kindness with strangers, and new friends, and always growth in all things, my dear friends and loved ones. Keren Or / Caren UPDATE August 30, 2006 ChaimYaakov ben Raizel (Steve Philips) 11 a.m. Mountain time Life Care of Longmont has agreed that they can accept Steve as a patient. I am very, very grateful for this. However, they are currently over their cap for Kaiser patients. They will inform the hospital as to when they think they will be able to actually admit him and they expect to know more by tomorrow. I continue to pray that there are no further complications to this course and that Kaiser and the current hospital can wait until he can be admitted. By going to this facility, Steve will be able to receive the remainder of Kaiser care there and then long term care coverage under separate insurance, without having to move again. Thank you for all your prayers and thoughts. I just want Steve to have every opportunity to heal in this coming month, to see how far he can get. The closer he is, the more I and friends can visit, and this is also essential to his healing. So, if all goes well, at the earliest he will not move until next week. Keren Or / Caren UPDATE August 29, 2006 ChaimYaakov ben Raizel (Steve Philips) Your prayers are urgently needed tomorrow, 6 Elul/August 30, when Life Care of Longmont facility will decide whether or not to accept Steve as a patient. It has been two months now. With some ‘wake up’ drugs in the past 3 weeks, Steve has slowly become more awake and alert and a little more responsive. However, it is not at a point that one can say conclusively that he is making voluntary movements intended to communicate. I have certainly found him to be responsive to touch and voice to relax. He moves his head from side to side and lifts it up. He can be responsive to nurses, turning to their voices. He has a presence to him that visitors have felt and it can be a compelling experience just to be with him. He increasingly seems content and pain free. His medical condition is stable, and he is looking better and better. But he is still on the trach collar, still receiving feeding, out of a coma but little better than a vegetative state. It is important, based on his neurologist’s opinion and research in the area, that he have at least another month to see whether his consciousness can improve. The hospital says that his condition is stable and he no longer needs daily doctor care. Insurance wants to pass him on to a skilled nursing facility for further rehabilitation (since that is the next and only step in insurance coverage), but two Boulder facilities have turned him down because his case is complex. I am therefore praying that Longmont will accept him, and we will find out tomorrow. He has been receiving PT, OT and speech therapy but at times they have questioned whether or not he is benefiting in the sense of making tangible progress. If he is sent to another facility is highly likely that he will be treated for a matter of 1-2 weeks, found not to be benefiting from rehab, not to mention any set back he may have (typically one week) from the move itself. Insurance would then refuse to pay and the only viable choices would be long term care or long term care with Hospice. Therefore, I am praying that Longmont will take him because he can remain there longer under his long term care insurance, and have whatever further opportunity is needed to see if he can make some reasonable progress. Apparently they will not keep him at the hospital solely based on the neurologist’s care plan. If Longmont does not accept him, I will ask for a meeting with the doctors and therapists at the present hospital. I do not want him to be moved to another facility in Denver. For myself, I have been embroiled in such things as: sorting out the insurance maze, talking to doctors and therapists, visiting long term facilities, plus starting a new job last week teaching 2 days a week in a challenging job that requires outside thought, planning and preparation. All the while grieving as I go, crying when I need to cry. Juggling what needs to be done at home. Especially due to work, I have experienced a reduction in the hours I can spend making the long commute to Denver to visit. Visits to the hospital by other people are therefore SO appreciated, especially when I can’t get there. My younger son is home for 2 weeks and that is a joy and a great support. And I continue to go to classes as able. So, I continue to try to be present for what is called for in the moment but lately I find it increasingly difficult to do so, being weighed down by the perception (especially now that I am in the work world again) that each day requires much thought, planning and many decisions. Trying to hold onto the knowing, even if I can’t always feel it, that this process is beyond my control and the process is very much being led by Chaim Yaakov. And, beyond that, that really nothing in this world is in our control. Yet we are asked to make choices in this life …. We still have to do the everyday. It wears on us and we lose clarity of perception because Hashem’s Presence can be so concealed. Lately I find this world to be a very, very strange place. I pray for clarity and guidance in decision-making. Even though I already have knowing of certain ways in which much good has and will come out of this, it is hard to hold onto in the moment, simultaneously also knowing that really we cannot know, or that it can all change. Which leaves me looking ahead to what is coming next (partly so I won’t be overwhelmed and disappointed) while trying to take each step as it comes. I want to thank everyone who has been holding us in their thoughts and prayers. I can feel the vessel created by that energy. At times it’s as if I’m suspended inside the empty space of that vessel, wanting to scream and kick the sides, sometimes unable to pray. But being held aloft by the knowing that you are all surrounding us with your prayers, love and support. I am deeply grateful for that blessing. May each and every one of us be blessed to enjoy health and love in our lives, and strength and support in our challenges. May we seek out and do the work that our souls are called to do in this world, each in a unique, yet interconnected way - in a way that we can hear and understand and do, with Hashem’s help and guidance. Keren Or (Caren) Bold sentences selected by webmaster UPDATE Mon. AUGUST 7 Steve Philips Chaim Yaakov ben Raizel Dear Family & Friends, Up and down and up. Last night and today Steve was responsive and more “present” in his body than he has been the last few days. Turned his head toward visitor last night. Today turned head when visitor stopped reading. Eyes open a lot. Responsive to touch. He is still on the lower dose of Provigil, in an attempt to wake up the brain, but now doing better with it physically and mentally. And so it goes… We are about to add some alternative therapies to his regimen - network chiropractic, a supplement he was taking before this all happened. Healer friends continue to show up and new friends made. Will keep you posted. Lots of people visiting again, and this really helps. And the staff at this hospital is really good. Keren Or / Caren UPDATE Sun. AUGUST 6 Steve Philips Chaim Yaakov ben Raizel Dear Family & Friends, The encouraging news seems to have been short lived. Despite my last report indicating responsiveness, these incidents have not been repeated and there has been no progress since that time. Nothing is happening, no increased awareness, little to no responsiveness at all. They are trying some drugs to wake up the brain. So far it has just made him hyper and increased muscle stiffness and reflexive movements. Physically his health is good and he looks ok. However, I feel like he is less there than he was before. I cry and then go on with life in small ways and cry again. I will follow Roger’s advice to make a place to sit with this and see what comes. I feel your love and support and am very grateful. Keren Or / Caren UPDATE AUGUST 1 Steve Philips Chaim Yaakov ben Raizel Good news today. Steve was responsive to nurse requests – to turn his head to the right (2 requests), to turn his head to the left, and to wiggle toes (he wiggled one toe slightly). This is very significant, if he can continue, because purposeful movements and following directions are necessary to rehab. He is to be evaluated by the neurologist tomorrow and I am so grateful for this move forward, observed by the nurses. We can only pray now for repeated and consistent purposeful movements, and continuation of the abilities needed to follow directions. May this lead to steady and rapid progress, rebuilding and restoring functions to brain and body, and quicker response time. This comes after a couple of days of Steve not showing any progress, little to no responsiveness, and little to no voluntary physical movement. Although days of no progress are to be expected, a few days ago it seemed that his only responsiveness indicated desires to this world, although that was inconclusive. I was giving up hope of any recovery whatsoever. The stress of commuting to Denver to visit was also getting to me. If he was waiting for my letting go to be able to leave this world, there was only so far I could go. I told him I could not let go of him until he goes. Then, in the last couple of days I began to share more with him about the general treatment plans and goals and how he needs to show progress, asking him to give it a chance. I told them that if he wants to leave the world, he can and I will just cope with it. Many people’s positive thoughts and prayers, believing in his strength to heal, have been showing up even when mine fails. Roger’s guidance and hours spent with Steve are such a gift. Steve has so many character traits that can be a source of strength for his recovery – he is centered, shows up for what is called for in the moment, loves physical challenges, loves intellectual stimulation and the challenges of spiritual growth, has humility and great inner strength, is thorough and detailed. He loves and appreciates being in this world in so many ways, and expresses it with joy. Steve is flexible – when he couldn’t run because of an injury, he switched to cycling. He loves being of service. He has such a pure, sweet soul and he is capable of great transformation in this life in such a way that he sometimes can’t remember how he got there. May all these traits form a wellspring to draw upon, for him and for all of us. The process, and the ability to be present with it, is more important than the outcome. And there is no hurry, except to be present. VISITORS WELCOME. PLEASE READ: If you want to visit, email me with approximate day and time. If you don’t hear from me in a timely way, call or just come. People can visit in the afternoons and evenings, as his rehab therapies and doctor visits are primarily in the morning. Select Specialty Hospital is inside Presbyterian-St. Luke’s at 19th and Franklin, in Denver. Go up the “B” elevator to the 5th floor. Please be sure to check in at the nursing desk first, and have them check and make sure that Steve is dressed/covered appropriately for visitors to be with him. Tell him you are there and who you are. Sing, talk slowly, sit quietly, See visitor guidelines on the desk in room, where notebook is. I cannot visit on Saturdays during the day, so I greatly appreciate anyone who can do so. Please record your observations in the notebook – they are very important. Wash hands and/or use sanitizer (see dispenser in room) before and after visits. With love, Keren Or / Caren Caren@BoulderAishKodesh.org UPDATE JULY 27 Refua Shelema for Steve Philips Chaim Yaakov ben Raizel The last 2 days have been difficult – a mixed bag, some positive, some ongoing hurdles with these kind of injuries, that we will continue to face. He has been at Select Specialty Hospital in Denver since Monday. This is now a 40 minute, urban drive for me. However, I like the staff very much, feel that they are skilled caregivers and caring people, and I believe that Steve is in the right hospital right now. But there are always difficulties reorienting with new staff, revisiting old decisions in new situations. We’d like to see continued, steady and more and more rapid improvement in Steve’s condition in the next two weeks and an increased ability to communicate via body movements.. If he makes good physical progress, e.g. off the trach collar and more stable overall, he will transition to a Boulder facility in a matter of 2 weeks or less. If he makes really good progress, however, they will keep him longer where he is and do more intensive therapies. Each day has had its challenges. Wednesday he had about of irregular, rapid heart rate for the 3rd or 4th time since his cardiac arrest on July 1. (This was/is his original “non-life threatening” condition for many years, although it is possible that one of the drugs he was taking for the condition could have caused the cardiac arrest, but no way to know and he’d been on it for many years without that problem. He typically had to have an electrocardioversion -low volt electric shock - every 1-2 years, when regular or situationally increased meds didn’t work). Wednesday, the doctor insisted on trying to “convert” (normalize) the heart rate using drugs, but the irregular, rapid rhythm continued for several hours. Eventually they did an electro-cardioversion, which always works and which I kept asking them to do from the beginning, since that was the plan at least once before at Community and/or Exempla hospitals. With the 3rd hospital, a new doctor doing things his own way, we have to re-do some of the same things. I am continuing to advocate for Steve and the standing order now is to use electro cardioversion if it happens again. I am insisting on full records from the 2 prior hospitals so we can get clear about the procedures and plans used there, and I will do my own summary with staff assistance. Steve seems to be more and more able to make purposeful body movements to communicate, e.g., moving arm/hand, or perhaps his holding his heart rate up was in response to questions put to him by Roger about life and death decisions. The neuro-psychologist visited with me at length yesterday and then did an abbreviated assessment of Steve. Although scientifically inconclusive he too, feels that Steve is making purposeful movements to communicate. Physical, occupational and speech therapists worked with him Monday and today, mostly doing range of motion. The plan is to get him more independent physically – e.g., off the trach collar entirely, so he can continue with rehab. This and the next 2 weeks is a crucial time in which we want to see continued and more and more rapid progress. There is incredible soul work going on and high drama at times, and it continues to be a hilly course, and very emotionally trying. I didn’t feel like I could go on this morning, but I am renewed this evening. I will stay in Denver for Shabbat, and other times as needed. It is a big deal to commute to Denver to spend time with him. It also slows down my email access. I am no longer able to respond to all emails, but that doesn’t mean I don’t receive them or that I fail to appreciate them. To the contrary! But I feel good about where he is. I will have a “talk” with Steve today about the treatment plans. There continue to be life and death moments almost daily. Yasher koach to those of you who continue to have the heart and courage to read and think about, and even participate in this challenging journey. If you are interested in visiting, please email me at Caren@BoulderAishKodesh.org and let me know when you want to come. I’ll continue to keep a rough schedule. Generally, the best times are afternoons and evenings, as his rehab therapies and doctor visits are primarily in the morning. Select Specialty Hospital is inside Presbyterian-St. Luke’s at 19th and Franklin. Go up the “B” elevator to the 5th floor. Please be sure to check in at the nursing desk first, and have them check and make sure that Steve is dressed appropriately for visitors to be with him. Tell him you are there and who you are. Sing, talk slowly, sit quietly, Write if you need an updated copy of the visitor guidelines. I cannot visit on Shabbat (Fri sundown to about 1 hour after sundown Saturdays) – and can’t take calls during that time: I greatly appreciate anyone who can visit when I can’t. Please record your observations in the notebook – they are very important to tracking progress. Please continue to pray for steady, rapid progress toward a complete recovery/rewiring of the brain, and for Chaim Yaakov to have the will to do the work necessary for that to happen. Please dedicate your Torah learning and mitzvot to the healing of Chaim Yaakov ben Raizel. (More to follow on this.) Please “take him with you” in your thoughts when you are out in nature, out for a run, cycling, hiking, and just appreciating the every day gifts of this world and when you have an opportunity to be kind and to receive kindness. We have so many daily opportunities to be kind and to speak truth for the highest good. THE LARGER PERSPECTIVE – AM YISRAEL From Chana Besser’s newsletter from Tzfat : Yonatan Shlomo Ben Rachel Gidon ben Yehudit two soldiers who were seriously injured Wednesday and need our prayers. And if you think the little things don’t matter, read this from Tzfat: DOG AND CAT FOOD AVAILABLE: I've been given a very large amount of cat and dog food to feed the stranded, traumatized and abandoned dogs and cats of Tzfat. I am asking anyone who would be willing to place food and water for these creatures of Hashem to please contact me and make the necessary arrangements. Food will be delivered to those volunteers. Remember Rivkah our mother and her chessed as she watered the weary and parched camels! - Chesed comes in all forms ~*~ zilpah 04-6920199. Subscribe to Chana Besser’s newsletter by writing to tsivya2@devartorah.com Love and blessings, Keren Or/Caren Tuesday, July 25, 2006 Yesterday morning, Steve was moved to Select Specialty Hospital, located on its own floor inside Presbyterian-St. Luke’s in downtown Denver. His awareness has been increasing since this past Friday, even before they took him off sedation. Roger came back yesterday and has spent many hours, yesterday and today, sitting with Steve. He is expected to be here for the next couple of days this week. Today, as has been typical in the last few days, Steve was bringing knees of both legs up frequently, moving left knee and right forearm up, moving his head, eyes open, eyes moving. He seems to get more active each day. Yesterday and today he was bringing his neck and head up, and beginning to move his tongue. He seems to be aware of voices and follows them somewhat. His progress is very, very slow but steady. Yesterday the OT, ST & PT all worked together on him, moving him and sitting him up, and I believe they did the same thing today. He will be seen by a neurologist tomorrow and a rehab doctor they are bringing in from Craig Rehab. Tomorrow the team will meet to discuss his treatment plan. Visitors will need to work around his treatment schedule, with more expected to be known by tomorrow. More doctors and staff to get to know. I still greatly appreciate your emails. Send directly to me at Caren@BoulderAishKodesh.org Please don’t call the hospital staff for updates. I’m sorry if I’m not updating every day; it usually means that there’s nothing momentous to report and of course I have to deal with my own emotions through all this. For family members, I am in phone contact with Renee H. frequently, provided that we can reach each other. If we need to change that, let Renee or me know. So far, I only have one person interested in knowing more about last week’s patient advocacy battles; I need a little more encouragement to write that up. Keren Or/Caren Friday, July 21, 2006 Dear Family and Friends, UPDATE 7-20-06 – Steve Philips (Chaim Yaakov ben Raizel) If you have limited time, you may want to read the 1st and 4th paragraphs. Visitng info is in the 5th paragraph. What you can do (additional prayers, giving tzedakkah (charity) – see organizations and names in 6th paragraph). 1. Focus for current prayers. It has almost been 3 weeks since the injury, and the coming 3 weeks are likely to be the most important time for us to see to what extent his consciousness will return, if at all. We have little hints of progress but they are mostly isolated instances that do not have a regular pattern to them. Our focus is on return of all brain functions needed for consciousness, including the ability to control the mouth and throat for breathing and for eating and breathing and higher order thinking, including the presence of sufficient function in the cerebral cortex and the healing/rewiring of new pathways to repair/replace damaged areas. Physical progress appears to be proceeding but he has not yet “woken up.” He does not yet have sufficient consciousness to fully breathe on his own although he has made a lot of progress (see below). One needs a certain level of consciousness to be able to clear the throat in order to breathe properly and not get infections, to be able to use the mouth and swallow in order to eat, let alone to be able to see and to communicate. 2. Catch-up/background. We are now three weeks after cardiac arrest, which happened when Steve was cycling but appears to have been totally unrelated to the exertion of the ride, since he had just finished Ride the Rockies, hundreds of miles of cycling through the mountains over several days. He also just received a yellow ribbon from the Bolder Boulder for having completed the 10K race 8 minutes faster than the average for his age, 60. The cardiac arrest happened one day before his 61st birthday on the Gregorian calendar. Within ten seconds of the cardiac arrest he received CPR from a friend and from another doctor, continuing for about 20 minutes when paramedics arrived and took over. He has an anoxic brain injury – i.e., he suffered loss of oxygen to the brain and loss of blood flow that is like having many small strokes. It is unknown to what extent, if at all, he will recover his higher brain functions. Statistically, the prognosis is poor. 3. Belatedness of update/a few notes about my journey. Forgive me for not writing since last week. It has been a difficult week, an emotional roller coaster, farther to travel to be with Steve (a half hour drive instead of a 5 minute walk), and I have had to meet with doctors and case manager a lot – but not enough as there was poor communication at the hospital and other concerns. I have had to do a lot of patient advocacy for him even while I was trying to deal with my own ever-changing emotions. (All of my concerns were borne out and all of my concerns ultimately addressed, but I had to hold firm. If you are interested in hearing more about this, let me know. It has been an education in and of itself.) This past Monday was Steve’s Hebrew birthday. It passed without any remarkable progress, a day of resting or a day of temporary loss of hope, depending on the moment. One day flows into another, living moment to moment. Sometimes I feel hopeless and other times hopeful. Feeling my own feelings and also trying to hold what Steve would want in mind, considering his Living Will. It is very different to talk about death and disability when you are healthy and what you believe you would want and not want, as opposed to facing an actual situation. (I am happy to speak more about these matters, if people are interested.) Roger LaBorde is assisting us and he has had a lot of successful experiences in bringing people out of comas and in assisting people to communicate their wishes to continue or not continue extraordinary efforts to keep them alive. He was here last weekend and will return this coming Monday. 4. Update on Steve’s condition. Steve’s breathing has improved a great deal and he is off the respirator entirely. For breathing and nourishment, he no longer has tubes in nose and mouth. He is breathing on his own with aid of trach and trach collar and he is also receiving nourishment in a more comfortable way (ask if you want to know more) though he is nowhere near capable of eating at this point. He no longer has regular involuntary muscle movements, but does still have some stiff muscle movements from time to time. He seems to be having some isolated, purposeful movements e.g., at times he has moved his arm; there are some small movements indicating more control of his mouth, some swallowing, and he has shown some beginnings of tracking ability with his eyes this past week. E.g., when I showed him photographs and described them he seemed attentive and each time I moved the photographs to his right, his eyes followed. When his head is moved, his eyes look back to where his head was, which is also considered a good sign. He has changed his head position several times, lifted his arm, moved toes a little. He has lost a great deal of weight and muscle mass in this short time and different infections come and go, with antibiotics being used. Being immobile is very hard on the body. He is off all sedation now. We started some physical therapy (range of motion that does not require consciousness) while still at Exempla Hospital and he will be moved out of the ICU on Monday morning and into a specialty care facility in Denver for about 2 weeks. Hopefully they will help him improve his breathing to the points that he can return to a facility in Boulder. They will also do rehab therapy; even if he is largely unconscious they can do a certain amount of physical therapy. He needs to have a substantial return of consciousness and motivation, in order to be able to be truly successful in rehab. If he returns to greater consciousness he will still need to re-learn how to eat, how to walk, etc. and this is a long road even with the most positive outcome. This current time period of 3-6 weeks post-injury is likely to be the most important time for us to see to what extent his consciousness will return, if at all. We have little hints of progress but they are mostly isolated instances that do not have a regular pattern to them. Whether or not he wants to continue living under these circumstances is a continual question. We may already have gone well beyond his expressed wishes; on the other hand, if he recovers a reasonable degree of consciousness and physical ability, then not. A question is how long to wait and how much progress needs to be made. Having already gotten this far, the farther we get down the road, there is no telling whether it will get harder or easier to make those determinations. Our preference is for him to have an opportunity to express his wishes directly, through responsive body movements, and Roger has had success with not only recovery from comas, but also with people indicating their wishes to live, or to die without continued extraordinary measures be taken to preserve their lives. 5. Visits and Support. Through Sunday, Steve continues to be at Exempla Good Samaritan Hospital on Route 287 and visiting is open 24/7. On Monday he will move to Select Specialty Hospital, 1719 19th Ave (& Gilpin). I don’t know their visiting policies yet. The phone number there is 303 563-3700. It is a 40 minute drive from where I live in Boulder. I hope that more people in Denver can visit than could before, especially since many Boulder people will have difficulty getting there. To date Steve has usually had several visitors a day and the various kinds of stimulation which we provide, as well as the observations of him that are noted in the notebook are extremely important to the progress of his healing. Please continue to keep me informed as to your desire to visit, so I can keep a general schedule. I am also extremely grateful for meals and other emotional support being provided, as well as offers of places to stay. Whenever I need support I especially appreciate having your emails. Please keep writing! 6. The larger picture. I am praying that all who receive this email are safe and that there is a secure peace in Israel soon. In the larger context of what is going on in Eretz Yisrael, I am grateful that my husband is being cared for and kept comfortable, and that I know where he is. We are all connected, so please include in your prayers for Steve (Chaim Yaakov ben Raizel), prayers for the well being and safe return of the kidnapped Israeli soldiers: Gilad ben Aviva, Ehud ben Malka, Eldad ben Tova, as well as a complete recovery for 4 children unconscious or critically injured in Tzfat, Israel: Michal bat Revital, Bat-tzion bat Revital, Avraham Natan ben Revital, Odel Hannah bat Revital, as well as prayers for the safety and health of all innocents in Lebanon and Gaza, and a safe and secure end to the war. Steve hasn’t known what is going on, though I have told him and maybe he can hear it. Please, please, send charitable donations with a complete healing for Steve (Chaim Yaakov ben Raizel) in mind, to relief efforts. Here are 2: Easy online or mail in donations to relief centers providing food and other support to people in Northern Israel & Gaza target zones (comes with high recommendations from friend in Israel) Contribute to Meir Panim b. Friends in Efrat, Israel have taken 300 Israelis, many of whom are recent immigrants from Russia, into their homes when they left to avoid shelling of Israel in the North. Donations can be made online to OhrTorahStone.org This is Rabbi Riskin’s institution which has donated both its dormitories and dining room to house and feed the Israelis from the north. In USA, checks can be mailed to Robbie Bensley, Director - North America 49 West 45th Street, Suite701 New York, NY 10036. In Israel, checks can be mailed to Yinon Ahiman, Director General Ohr Torah Stone P.O.Box 1037 Efrat, Israel Also, attached is a compelling and well written slice of current life in Tzfat, Israel (which has been shelled repeatedly), written by our dear friend Chana Besser,. If you are interested in getting Chana’s ongoing email from Tzfat write to tsivya2@devartorah.com To Stay or Not to Stay - Chana Besser With love and blessings and thanks for your continued concern, visits to the hospital, emails and all of the countless ways that people have reached out to help, which has creating a supportive safety net. May we spread that safety net even wider, love, Keren Or / Caren |
Last modified: 6:44 PM 3/26/2007
