Rock on Carla Z!

If you've not discovered and/or taken the time to read the blog Carla Muses, you are seriously missing out.  Just my opinion.  Carla Zilbersmith is sassy, smart, and wicked funny.  Oh...and she just happens to have ALS.  I didn't know her bALS (before ALS) - my loss I assure you - but I suspect the disease has only served to sharpen an already razor-sharp perspective on everything...from the world, politics, dating, self care and quite literally, EVERYTHING in between.  She is a gifted writer, gamely sharing her ALS journey in full, out loud, living & breathing, color.  Late to the game, but yes....I am a fan!!

With that in mind, you should not be surprised to hear that she's written an informative and (it wouldn't be Carla's if it wasn't!) irreverant guide to living (with a capital "L") with ALS instead of waiting around to die from it.  While the Vain Girl's Guide to Living with ALS is clearly targeted to women living with the disease, never fear.  With and open heart and an open mind, there is something for everyone.  There are quite a few take-aways for me!!!

Once your laugh muscles are warmed up, the next step is to check out the film "Leave Them Laughing - a Musical Comedy about Dying".  Treat yourself to a full, "Carlaful" experience.

Enjoy!!

ALS claims tireless California ALS Advocate Steve Hall

I met Steve Hall twice during my tenure as the Advocacy and Public Policy Chair for the ALS Association - Greater Bay Area Chapter.  After his retirement from the ACWA in 2007, as the effects of ALS made it difficult to work, Steve became an advocate for legislation on ALS at the state Capitol. His motto became, "As much as I can for as long as I can." Steve held the ear of many influential legislators in Sacramento, testified on behalf of ALS Patients for legislation carried to the State Senate and Assembly, and helped to open important doors for the CA ALS Advocacy team.  He was every bit as gracious and courageous as Bob describes.  

On Thursday, January 28th, a floor session is scheduled in the California Senate.  Senate President pro Tem Darrell Steinberg will speak about Steve’s life, his battle with ALS, and adjourn the California Senate in his memory.  

I too, am saddened that another champion has been lost to ALS and send his family my fondest prayers and wishes as they grieve Steve's passing.  Each of us can hope that our lives are remembered in such a warm and clearly enthusiastic manner!

Greetings:

It is with a heavy heart, that I share with you news I received this evening that Steve Hall passed away this afternoon due to the ravages of ALS (Lou Gehrig's Disease).

Steve was a blessing to me far more than anyone can ever know. He was a competent, loyal and caring boss for nearly 10 years during my tenure at ACWA. He was a wonderful mentor. He was a great friend. He was a brother in Christ. It is the faith I share with Steve upon which I rely upon tonight, comforted in the knowledge that Steve has escaped from his broken earthly body and entered into glory to experience joy and peace eternally with our Lord and Savior, Jesus Christ. I know that Steve's faith carried him through the suffering he knew that lay ahead of him when he was diagnosed with ALS. His spirit was strong; his smile and sense of humor still evident long after he lost the ability to speak. What bravery and courage he displayed for all of those who knew him. I shared my e-mail updates with him during the water conference committee hearings this past fall. He replied one day, taking great glee that nothing much had changed in his absence and admonishing me to keep up the fight.


Steve and I first met when I worked as the senior consultant to the Assembly Water, Parks & Wildlife Committee in the mid-1980s and Steve was head of a San Joaquin Valley farm water coalition forged during the Kesterson Reservoir agricultural drainage (selenium) upheaval in the San Joaquin Valley. Water deliveries were threatened; farming was threatened and entire communities held their collective breath. Steve swung into action in the State Capitol, admitting to being out of his element, but one would never know it. He accompanied then Assembly Member Jim Costa and me to meeting after meeting, hearing after hearing. We took on those interests and powerful legislators who would rather see farming in the west side of the San Joaquin Valley abandoned and won a 3-year reprieve for farm drainage ponds from the Toxic Pits Cleanup Act.

Our paths did not cross again until Steve was named Executive Director at ACWA. I was General Manager of the El Dorado County Water Agency at the time and I was asked to take part in the effort to rejuvenate and reorganize ACWA. The personal characteristics that Steve demonstrated in our earlier work together remained when I worked with him again in our respective new roles. His leadership qualities, his ability to listen, his steadiness, his ability to slow down for his members when necessary were becoming more evident to those who did not know him before he took over the leadership of ACWA. He wasn't perfect mind you and I do not intend for you to reach such a conclusion. Steve would be the first to counter any such contention.

I left the El Dorado County Water Agency in the summer of 1993 and embarked on a 2-year adventure in public finance investment banking. My timing was poor as the bottom of the municipal finance market fell out after a historic run of refinancings made men and women in the industry wealthy. I suffered two layoffs within 13 months of each other. In May 1995, I came up to Steve at the ACWA Spring Conference at Lake Tahoe following a luncheon event. I just wanted to say 'hello' and renew our acquaintance. He greeted me warmly and spent a few minutes getting caught up as staff and members swirled around him beside the head table. He asked me if I ever came through Sacramento and if so, could I stop by to visit. Something told me this was more than Steve being gracious, so I called his assistant Audrey Ryder the following week. He and I met about two weeks later and he shared with me that he was thinking about reorganizing ACWA staff--would I be interested in coming to work at ACWA to lobby for the Association? I told him that I would be interested. He said he had a long way to go in the process, a lot of people to talk to, other candidates to think about, an executive committee and a board of directors to convince--if the reorganization occurred, it could be 6 to 12 months away from happening. Four weeks later, while I was assured by the partners of the regional investment banking firm where I worked that they thought I had a future in public finance, they asked me to stay on without pay--relying solely on commissions for the immediate future. Since I hadn't earned a commission in two years while at two firms, and I had a family and mortgage to take care of, I asked to be laid off. I called Steve from a pay phone in Walnut Creek about an hour later. I asked him if he had thought any more about our conversation. He said that he had and asked why I was calling. I told him about getting laid off. He said he would get to work on bringing me to ACWA. I started working at ACWA in the new position of State Legislative Director on August 1, 1995--six weeks after that telephone call!


There are too many funny, too many interesting political and workplace stories to share here--many intensely personal and private experiences that will remain between Steve and me.

Steve was always very health conscious and very athletic--playing tennis with Jim Costa and others; golfing with Mike Dillon and others; playing basketball (and blowing out an Achilles tendon). Well, even with all of that physical activity, he returned from an annual check-up to share that he had high cholesterol and needed to take better care of himself. He tried mightily to stick to a healthy diet. I can't tell you how many times at ACWA department manager meetings during that time that the managers laughed amongst ourselves as Steve--over the course of an hour or two hour meeting, started out eating just one quarter of a muffin or doughnut, only to go back three times to end up eating the remainder of the muffin or doughnut--I guess it had fewer bad calories that way! Well, this lead to one of the few lighthearted moments that came after Steve was diagnosed with ALS. He was still working at ACWA, but at that time confined largely to the JoyRider to move about. I happened to be visiting on the second floor of ACWA HQ one day when Steve came around the corner toward his office with the largest chocolate-covered raised doughnut on a plate in his lap that I think I have ever seen . I said: "Well, I can see you're not worried about your cholesterol buddy!" We both shared a laugh.


I am blessed to have known Steve Hall; I am a better man for sharing a part of my life with him. Words are wholly inadequate to describe the loss I feel tonight. He deserved much better from life, but had no complaints.

Some of you knew Steve well, some of you were acquaintances and some just knew him by observing his work at ACWA. Please feel free to share this small remembrance with others as I do not have all the e-mail addresses of friends and colleagues here at home. Please keep Steve's family in your thoughts and prayers.

Bob
Reeb Government Relations, LLC
1107 9th Street, Suite 510
Sacramento, California 95814
PH: 916-558-1926
E-mail: robertreeb@comcast.net

Angels Among Us...continued

So…hospice is a little tricky, psychologically. Timing is everything! When you turn to hospice, you are admitting that the end of your physical life is somewhat imminent and that you do not want to take any extraordinary measures to extend it. You are going to die. Soon. And you are ok (more or less) with the next steps. Not a decision to be considered lightly!

 

Bill and I were clear with each other that we weren’t ready to give up hope. But, to “understand our options”, we filled our hospice prescription about a month later. As we suspected, we were a bit premature. But, it turns out, there is a step you can take that extends some, but not all of the benefits of hospice. It’s called Palliative Care – think hospice lite. Our experience was brief but positive. I would highly recommend that anyone facing a potentially life threatening illness investigate the services offered by palliative care practitioners in your community.

 

Our stay in palliative care lasted about a month…until our next clinic visit. By then it was clear that Bill’s ALS had a plan of its own and didn’t really care about our need to get comfortable with the stages of the disease. The palliative care nurse recommended that we contact hospice. It turned out to be the best decision of our lives.

 

Because it’s scary to admit that death is inevitable, and potentially close at hand, it’s hard to bring hospice into the picture. Typically, the hospice team is brought in during the last stages of the patient’s life, allowing them to die outside of the clinical environment of a hospital, affording comfort and dignity. We filled our prescription and received a perspective on what hospice COULD be.

 

If the hospice caregivers are brought into the family early on, they have a chance to get to know the patient, the family and gently walk everyone through the process. Not that their job is especially fun, but it isn’t meaningful for them if they are just around to help medicate a patient. They will do it, but optimally, there are lots of resources available which can make the journey much easier for the patient and for the primary caregivers. For example,

• Chaplains can address spiritual needs.
• Social workers can bring in community resources.
• Nurses and medical professionals can baseline vitals and have the difficult end of life discussions at a pace that seems comfortable and respectful.

And so it was with us. A care team was assigned to us. Jolene was the case nurse and a perfect fit for Bill. She respected him, listened to his wishes, was his advocate when I disagreed with a particular course of action and in general got to know him as a whole person. Not just a patient with symptoms to be managed. I loved her, because I could use her as an ally as needed! Jolene handled any major medical issues and made sure I was trained to handle the day to day issues. In the early days, a team of aides came twice a week to help with bathing and personal care. As we progressed, they came more often, giving me an hour of respite and Bill a clean shave and a smiling disposition. Showers will do that! Emmy was always his favorite. Hospice programs vary, so do your homework to find a good fit. I know of an ALS patient and his wife who received regular massages in their home as part of their hospice services!

I’m not certain why someone chooses to pursue a career in hospice. It may be that hospice chooses them. No matter! I am eternally grateful for these special angels among us. Thanks to them, the passage from this life is easier, and the resulting “good death” can indeed be celebrated.

Also posted to Fashionable Giving

Angels Among Us

When we are born, we come into the world amid much celebration and joy. When we die, why isn’t it the same?


Full disclosure at the beginning. Some may find the next few posts uncomfortable to read, because we don’t generally discuss death and dying in this culture. I hope you will stay with me as I share part of my personal story and thoughts on a model for a good death as I recognize the many angels who have chosen a career in hospice, during National Hospice month.


In my lifetime, pets, grandparents, friends, in-laws, my dad and my husband have died. For my dad and my brother in law, a gunshot wound and a motorcycle accident ended their lives almost instantly, mercifully. For those of us left behind, the process of processing their death was painful. We have all been very philosophical, saying “at least he didn’t suffer”. But it still hurts some 20+ years later when I want to run something by my dad and have to grapple with the quantum physics/time-space continuum involved in that conversation. Needless to say, I’m snapped quickly back to the present moment! We have the conversation; I just have to listen a little more closely for the answer!


Since pets have chronologically shorter lifespan, we are generally prepared for them to die in our lifetime. I completely agree that the grieving process is intense, but philosophically, humans tend to be more prepared for a pet death. For my pets, I have been grateful for the caring counsel of a marvelous team of veterinarians!


For everyone else I’ve lost, hospice staff and volunteers have often been involved, at least to some degree. In the cases where hospice was involved, they were generally brought in at the last few days/weeks of life, primarily to help manage pain and offer some comfort to the survivors. And I will never be able to sufficiently express my gratitude for their marvelous work!

When we received Bill’s ALS diagnosis, we did a lot of soul searching. We suddenly found ourselves facing a lot of questions about death and dying. And….facing a question neither of us planned to discuss at only 23 years into our relationship. I’m not sure when we planned to have the conversation exactly, but I promise you, it wasn’t then! And from a now experienced vantage point, questions like “How do you feel about death?”, “What is quality of life for you?”, “Do you want to be buried or cremated or something else?”, “ What kind of funeral would you like to have?” need to be brought up sooner than later. Yikes!


As I write, I am so grateful for the counsel of Dr. Will North, one of the finest human beings I have ever met, and a darned good neurologist! During one of our early visits, with Will, Bill needed to know the particulars of what the last few hours and minutes of his life might be like. Not an especially surprising curiosity from a guy who had spent a most of his career in rescue situations and had seen his share of death. Me….I started to squirm and look for the exit route, knowing full well there is no escape, either from ALS or this particular conversation. Damn!


With his characteristic candor and amazing bedside manner, Dr. North walked us through what the final days and hours would likely bring for Bill. Turns out that the ONLY kind thing about ALS is that in most cases, it allows the patient a very peaceful passing and I can report that is what happened for us. Once Dr. North had satisfied all of Bill’s technical questions, he broached the subject of hospice and wrote out a prescription, with the understanding that we could “fill” it whenever we were ready. I remember our walk back to the car and ride home as exceptionally quiet as we each processed this new information.


I don’t remember who finally broke the silence but it was as if each of us was waiting for the other and finally couldn’t stand it anymore! We agreed that we were too early for hospice – Bill was still walking at this point – but we agreed that when the time came, we wanted hospice involved.


To be continued….

Also posted to Fashionable Giving

Bill turns 49 1/2

In January 2005, in the midst of building a ramp for the house, getting Bill ready for his wheelchair and who even remembers what else, our friend Connie asked, "Bill will be 50 this year, right?"  Indeed, his odometer would turn to 50 in October.  Always up for a party, Connie suggested we start planning!

A couple of weeks passed and it became pretty clear that Bill's ALS was progressing much faster than any of us were prepared for.  I called Connie and suggested that we hold off on the planning.  Based on his progression...it didn't look like we'd have a guest of honor for this bash and I didn't want to put anyone through a lot of trouble or heartache.  She said she'd get back to me!

Within a matter of days Connie had decided that waiting was not an option.  She delivered the new plan.  We would we quickly organize and still throw the party to celebrate Bill's 49 1/2 birthday!  I told you....she's a party girl!!  She and her husband Eric organized all of the details.  Bill and I had just 2 assignments.  Put together the favors and show up to enjoy some snacks, cake and the good wishes of friends and family.

Every picture tells a story!  This one tells of an amazing group of friends, who quickly organized before ALS could snatch their friend, to celebrate a milestone birthday - 6 months early!  Bill is smack in the center grinning, and Connie is in the lower right corner, with the bright, beautiful smile in the black, floral dress. I've told them personally, but this tells the world how grateful I am for the friendship I enjoy with Connie and Eric.  I will ALWAYS appreciate their thoughtful, unselfish gesture. 

Oh...and the party favors?  A CD of Bill's favorite songs.  No small task for a 15 year DJ'ing veteran!  Volume I was such a hit, he immediately received requests for Volume II.  But that...is another story!

Here's the playlist...You'll probably scratch your head and determine that my husband's taste in music ran to the extremely eclectic.  And you would be so right!!  Enjoy...and let me know what's playing on your iPod!

1. Fox Fanfare
2. Beach Boys - 409
3. Disney - A Pirates Life
4. Eagles - Hotel California (w/acoustic intro)
5. Free - It's All Right
6. 3 Stooges - Hello (sound clip)
7. Jump in the Saddle - Curly Shuffle
8. Los Lobos - Mustang Sally, Slow Your Mustang Down
9. Michael Franks - Inside You
10. Star Wars Quote - "I find your lack of faith disturbing" (sound clip)
11. Ray Charles - America the Beautiful
12. Santana - Samba Para Ti
13. Sara Evans - Suds in the Bucket
14. Animal House Quote - "Fat, Drunk and Stupid is no way to go through life son" (sound clip)
15. Shelly West - Jose Cuervo
16. Southern Comfort - Liquored Up, Lacquered Down
17. Steppenwolf - Born to be Wild
18. THX Movie Opening Theme
19. Vivaldi - Concerto in D Minor, Allegro
20. Toby Keith - Courtesy of the Red, White, and Blue
21. War - Low Rider (remix)
22. Tracy Byrd - The Truth About Men
23. AD/DC - Back in Black
24. Backdraft Sound Track - Fahrenheit 451
25. Braveheart Sound Track - Amazing Grace