One of the BEST daily emails I subscribe to is called Peaceful Daily.  Thank you Sandy for your daily wisdom, and especially for this story....a reminder to me of all the "shit" that's been shoveled my way.... it doesn't have to bury me, it can be a way up and out.  How are you shaking off the dirt and stepping into your freedom.  It's always a choice!

Peace


One day a farmer's donkey fell down into a well. The animal cried piteously for hours as the farmer tried to figure out what to do. Finally, he decided the animal was old, and the well needed to be covered up anyway; it just wasn't worth it to retrieve the donkey.



He invited all his neighbors to come over and help him. They all grabbed a shovel and began to shovel dirt into the well. At first, the donkey realized what was happening and cried horribly. Then, to everyone's amazement he quieted down. A few shovel loads later, the farmer finally looked down the well. He was astonished at what he saw.

With each shovel of dirt that hit his back, the donkey was doing something amazing. He would shake it off and take a step up. As the farmer's neighbors continued to shovel dirt on top of the animal, he would shake it off and take a step up. Pretty soon, everyone was amazed as the donkey stepped up over the edge of the well and happily trotted off!

MORAL: Life is going to shovel dirt on you, all kinds of dirt. The trick to getting out of the well is to shake it off and take a step up. Each of our troubles is a steppingstone. We can get out of the deepest wells just by not stopping, never giving up! Shake it off and take a step up.

Extra Hands

One of the serendipities that happened to us was a group called "Extra Hands for ALS", founded by Jack Orchard, an ALS patient who lost his battle way too young. The premise was to get high school and college students involved in specific volunteer work to help families living with ALS, and then educate the general public about their experience.  Help families, great ALS awareness/advocacy, and a great learning experience for young adults.  Win, win win!

I'm sure that the experience was different for every family involved in the program, and sadly, the group died out not long after Jack died.  Still, we had a wonderful experience with Matt and Julia, our "extra hands" and the nuggets of experience I took away could reasonably be applied today, without a formal program.  I think!  Here are some thoughts on how someone in an "ALS Tribe" could harness the energy and enthusiasm of students and young adults to benefit a patient/family.

Disclaimer....please, please, please, use good judgement and common sense!  If you are the primary caregiver for a patient, DO NOT attempt this.  You have far too many other things to worry about!  Do what makes sense for you, the group of young people involved, and absolutely respect the wishes of the patient and primary caregiver.  The idea here is to help them, not add unnecessary/unwanted stress, even if your intentions are honorable. 

Logistically, you will need

• a mentor
• a schedule
• a willing family with an ALS patient - or any other chronic/catastrophic illness actually!
• a few willing students
• tasks that the family feels comfortable delegating or having help with.

The MENTOR is the liaison between the family and the students.  This person should be strong in organizational, scheduling and diplomacy skills.  He/she will be the one to coach both the students and the family, help resolve disputes and to generally supervise the relationship.

The SCHEDULE is coordinated between the family and the student.  Kind of obvious...I know!  We found that once a week, for a couple of hours worked out really well.  It gave me time to organize tasks and think abouut any instructions that might be needed.  And, it gave Matt and Julia the structure they needed to plan for homework and other activities.  Depending on the task(s) and the time of year, your schedule could be different, e.g., more frequent, but less time; less frequent, but more time; more people, regular rotation, etc.  You will know what works for your situation.

The WILLING FAMILY.  If you are a relative or neighbor who takes on the mentor role, one of the biggest challenges will be to work with the patient and primary caregiver.  In general, my experience has been that patients and their families are pretty private and will insist that they are quite able to handle things on their own.  No one wants to be a burden to anyone else.  You may have to get creative in your approach to find the willingness!  It's a delicate balance between handling everything and delegating tasks to relieve the burden of caregiving.  And there's always the competency dance....no one does it like I do, or like I like it done.  We humans are funny that way!!

For example, it's pretty easy to suggest allowing a student to walk the dog(s).  Easy to do and not much instruction needed. And...somebody needs to do it!!  However, if the only respite the primary caregiver gets is the 30-45 minutes to take a walk and clear their head, they are probably not going to delegate.  If however, you know that the dog is getting a quick 5 minute "do your business" outing, a longer walk a few times a week will be good for the dog and likely relieve some guilt that the family pet is getting short changed!

Grocery shopping is another easy, but tricky to delegate task.  For Bill and me, shopping was always like a date for us, so it was hard for me to let go.  However, by having Matt and Julia become Bill's arms and legs at the local Safeway, he was able to get a change of scenery, feel like he was still contributing and he often managed to teach the kids something they wouldn't have learned otherwise!  They usually returned from these outings all smiles, and the 45-90 minutes of peace was a great gift for me.  It often meant I got more that a quick rinse off in the shower and I could "doll up" a little.  A pretty good trade off!

One of the most special events that came out of our EH experience was a dinner that the kids prepared for their parents, who hadn't met prior to the program. Under Bill's direction, they planned the menu, shopped for and prepared the food, set the table, provided the entertainment (we watched them cook/interact), and cleaned up the mess. I can't speak for the parents, but I was truly impressed by how well the kids worked together, as equals, to bring fun into our home and provide a brief glimpse into their futures. It was a truly special evening!


WILLING STUDENTS.  We were lucky!  The Extra Hands team recruited and screened the students in the program.  If you're working with family members or neighbors, you're probably familiar with their skills, temperaments and background.  I would NOT recommend organizing strangers, unless you have the background and resources to screen and insure these volunteers.  It's a HUGE undertaking.  Again, please use common sense!!!

One of the components I found appealing about the EH program was the learning opportunity for the students.  At the end of each 6 month segment, or at the end of a volunteer engagement, the students were required to formally document their experience.  Julia and Matt both did formal write-ups for school projects. Julia shared hers with me at the time of Bill's death and it was quite moving. I haven't seen her in 7+ years, but she left a beautiful imprint on my heart and I think of her often.

You might encourage your volunteers to keep a journal or diary of their experiences.  Record the day's events and their thoughts on the patient, the relationship, how they were challenged, what they had to overcome....really anything and everything!  Think about this as you set up your program.

You can also arrange a regular meeting with the family as a check-in session to share these types of insights.  I imagine that it would be a rich and rewarding experience.  It will also help with insights into additional opportunities to provide help.  A quarterly session to consider what is working and what can be improved, can also be rewarding.  If the patient progression is rapid, you might want to meet more frequently. 

The TASKS are limited only by your imagination and the willingness of the family. 

• If there are younger children, students can help with homework or help out with household chores.
• Yard work is an easy to manage project as well.  Consider basic mowing, raking, weeding, deadheading, or annual planting. This is also a good, one-time project for a neighborhood group to tackle!!
• Routine chores like folding laundry, making beds, helping kids clean rooms are tasks that are easily delegated.
• We had Matt and Julia help prepare meals, take Bill grocery shopping, build a kitchen island (3 week project), shop for plants/potting soil, and I'm sure there are more that I've forgotten!!  As previously mentioned, grocery shopping was a favorite.

A little imagination, some good organization and great communication can go a long way! Consider setting up an Extra Hands "like" program for someone you love and please leave a message on how it goes.  I'd love to hear about your experience!

 

Grieving is funny business



Dec 1981.  L-R Back: Dad, Auntie Shirl, Mom
Middle:  Nam & Mac
Front:  Grampy & Grammy

Over the years, I've worked through the loss of people I dearly love; my dad, 25+ years ago; all of my grandparents; a couple of friends from my youth; and Bill, a little over 7 years ago.  I know definitively that I am resliant.  I don't stay sad for too long.  I always bounce back from loss.  

I've also learned over the years that for me, grief has funny, often peculiar, triggers.  The 1st year after I lost my dad was tough, but I was pretty numb, so milestone days (his birthday, Father's Day, Christmas, and the like) passed with little notice.  I was sad, but not grief stricken.  That came in the 2nd year, and in a big way!  My heart had healed just enough to form an emotional scab.  It didn't take much (a song, a piece of paper, a random comment, really anything!) to rip that baby off and expose the tenderness, unleashing a tsunami of tears. There were times when I was sure that I would never stop crying and that my heart would never, ever mend.  And so it has gone with the other losses in my life.  1st year - numb sadness.  2nd year - horrid, unrelenting grief and tears.  3rd & subesquent years - better, a little at a time.
 
This past summer, I finally completed a search for a primary care physician and had my first appointment with Dr. Alphaeus Wise.  Long story!  As part of the new patient process, I had to list, in one place, my family history.  I'm sure the last time I had to do this was some 30+ years ago, when everyone was still alive!  Good Lord!!!  As I completed the form, I found myself alternating between tears of sadness and joy.  Quite surreal I promise.
 
It was the first time, in a VERY long time that I found myself alone with my personal history; thinking about my family and how much they meant to me, how much of their history I carry, and what characteristics each one gifted me.  My Grammy Jean was "uber" creative and ran a very organized household.  My Grampy was strong, charismatic and stubborn. My grandma Nam was social and demanded good manners.  My grandpa Mac was "chill", quick with a smile and fiercely loyal.  My dad believed the best in everyone and pushed me to be authentic (walk your talk!) way before 'authentic' found its way into our vocabulary.  These qualities and so many more are who I am.
 
So the reflection time in the waiting room brought a torrent of inexplicable tears.  Thank goodness for Kleenex pocket packs! I finished the forms and mopped up most of the sadness. So, imagine my surprise as I start crying, yet again, when my new doc's opening line, after introductions, is "so...you've been through a quite a bit in your life!"  Not the suave first impression I would have hoped for! 

And so it went; sniffles, tears and laughter as we went thorugh my personal and family history.  Lucky me...Dr. Wise is just that, and found a way to turn the conversation around so I could find my way back to my sunny self. 

I share this in the hope that you will be gentle with yourself as you walk your path of grief.  Don't be surprised by anything, just "be" with it and know that all is in order. 
Grieving is a funny business.  Just when you think you have it all figured out - you don't.  And it's all good!

How about you...how has grief played with you?  Please share.

 

Anniversary #2

June 18th of 2012 marked the 2nd anniversary of my mastectomy surgery.  The day passed by pretty quietly!  It seems so long ago and yet almost like yesterday.  Time is funny!!

Daily, I'm reminded of my surgery as I inspect my surgical scars.  As scars go, I think they're quite beautiful!?  Vivian Ting is truly an artist!  Thanks to my oncologist, Dr. Garrett Smith, I take a 25mg dose of Aromasin daily to block the estrogen my body naturally produces. Daily, I try to get in some exercise to minimize the fat cells on my backside, which, by the way and thank you very much, is my body's main sources of estrogen in my post-menopausal status, !!  The irony!

And daily, I try to end each day with at least 5 things that I am grateful for.  "Vibrant and perfect health" is nearly always at the top of the list.  2 down, 3 to go...happy anniversary to me! 

 

Happy New Year 2013!!

I've been writing in a notebook for about a year, capturing random thoughts around ALS, Bill's life, our adventures with ALS and a little about my post-ALS journey.  One of my resolutions for the new year is to write regularly.  My intent is to have this resolution last longer than most! 

May 2013 support your resolutions and bring all that you hope for!!

Hospital Gown + Confidence = Oxymoron

Fifteen years in retail fashion taught me many things.  But the most important thing I learned is that when I feel like I look good, I honestly feel and "do" better.  To this day, if there is an important event - interview, meeting, presentation, date, etc., I will take the time to make sure I have the perfect outfit and all the correct accessories.  Then I only have to worry about what I'm going to say....not about how I look.  Why, you might ask, is this important to share with you???

In my opinion, going into the hospital, for any reason, is a time for making sure all of the confidence chips are stacked in your favor.  The night before my mastectomy, I laid out a cute, but comfortable outfit.  On surgery morning, I showered and got dressed.  Took time to do my hair.  No make-up, but made sure my face was clean and moisturized.  My friend picked me up promptly at 5:00AM with "wow, you look adorable!"  With my confidence boosted, I was ready for surgery!  

At 5:30AM, the pre-op nurses, put a quick and decisive end to my adorable-ness when they handed me a bluish-gray, standard-issue, one-size-fits-none, hospital gown w/unmatched robe, white compression stockings, gray slipper socks with white grippey stuff on the top AND the bottom and an over sized "hat" that most self respecting cafeteria workers would not be caught dead in!  In the span of 30 minutes, I went from confident patient, to just another patient to be operated on, and I was less than thrilled.  Now, before you start in, I can practically recite all the reasons for this change of garments, but does it really have to be that way?????

According to Rachel Zinney, the founder of Dear Johnnies, the answer is a resounding NO!  The tagline "the get better hospital gown", is true!  With a little pre-planning and some cash, I gave myself the gift of dignity and style, in a place where there is precious little of either!!  You can give yourself or someone you love, the gift of a hospital gown that is bright, stylish, improves the color in your cheeks, covers your assets AND meets the needs of your medical caregivers.  A win-win all around! 

It will probably take a little work to convince the nurses, that your hospital gown is not just any gown you brought from home to wear in the hospital - but I promise you, it is absolutely worth the effort!!  The minute I changed into my own gown, I started to feel more like Kathie and not "the patient in room 95W".  These gowns are the genuine article - open in the back as needed, but snap closed and tie in the back to protect your dignity as you walk around the floor, and have shoulder snaps to accommodate IV equipment or nursing.  Size matters....so these gowns come in a couple of sizes, including Plus for several styles.  Once my nurses were satisfied that they would not be inconvenienced, they were quick with the "oooohhhs" and "aaahhhhhs". Sprung from the hospital, I re-gifted my COCO gown to my friend Megan, an ALS patient who is in and out of the hospital....hopefully she will feel just as stylish!

Thank you Rachel for giving us confidence and dignity at a time when we feel especially vulnerable!

Props to Peter Shankman and HARO for sharing the Dear Johnnies link earlier this year!

Bringing Sanity to Mass Communication

Back in January, as I was beginning my journey with breast cancer, I quickly discovered that, one of the biggest challenges of getting sick, is that
my friends all wanted to know how I was doing, and more importantly....how they could help me. I found myself fielding lots phone calls at all times of the day and night, and I felt like I was always repeating myself...."haven't we already talked about this?"  I didn't know who I'd spoken to, couldn't remember what I'd said or who I'd spoken to, and frankly, it was tiring for me.  But I clearly understood the love and concern of my friends, and their need to know what was going on, so that I didn't feel alone.  

In frustration one day, as I chatted with my friend Patti, I remember saying that "I just needed an easy way to communicate with my friends and family, you know, post it once and let them log in to see what was going on."  I've been around technology long enough that I was sure there was a solution, I just didn't know about it.  Her answer,"why don't you just set up a CaringBridge site?"  My startled response, "I've never heard of CaringBridge."  Turns out this is the best kept secret on the internet!! 

It was easy to get started.  You can do this as a patient, or someone on your caregiving team can work the magic!  Once the basics were in place I could start typing my thoughts into the journal section.  I can share thoughts, test results, updates and more, once.  Then friends and family can log into the site with a web browser and get the exact same information, when it's convenient for them.  Did I mention that the best part is I only have to post it once!?  My CaringBridge journal has significantly cut down on the number of phone calls, which allowed me to get the rest I needed and heal.

I still get lots of calls, but now it's to offer good wishes, fill in some of the details on what I posted and catch up on their lives...it's the best!  Since I started using Dragon Naturally Speaking, I just speak my thoughts into their journal site and it's even quicker!  The guestbook section allows anyone to leave encouraging messages, which has proved invaluable over the past few months, helping to keep my attitude positive and strong.

CaringBridge is easy to setup, easy to maintain and more importantly it easy to share the login credentials.  This was a huge help when I was in the hospital, when everyone was the most worried!   No one had the burden of answering a million phone calls to find out how I was doing!

The most time consuming part of getting started was collecting all of the e-mail addresses of friends and family and sending the URL once I had the site set up.   This part requires a bit of advance work, but it's worth the extra effort.  To the Dev team at CaringBridge, if you're listening...it would be awesome if there was a built-in tool to import an address book!! 

I use Outlook.  I used the export feature and created a master list of friends and their phone #/e-mail addresses.  From there, I created about 10 logical categories, based on a common thread (e.g. church, relatives, colleagues, belly dance, etc) and asked one friend in each group to be the point person.  I gave each point person a list of close friends associated to that group and then gave the master list to my friend Cindy.  Several friends sent out an advance notice, pointing their list members to the site early!

The best part of all this, in my opinion, happened on surgery day.  Cindy made about 15 calls and one posting to the site to start the communication tree; notifying about 450 of my friends and family members, scattered across the world, that I had made it through surgery with flying colors. It was awesome!

To get started, go to www.caringbridge.org.  Have fun, pass the word about this cool resource, and let me know how it's going!

School was NEVER this much fun!

I'm a student again!!!  I've returned to a learning mode, working to learn the craft of blogging.  In the past few weeks, I've read a number of blogs and have stumbled onto some great practical resources. One of them is pro-blogger.net. On July 15th, Darren Rouse, the author of pro-blogger.net posted a challenge to his readers to take part in the 7 Link challenge.  The idea is to publish a post a list of seven links to posts that you and others have written that respond to the seven questions listed below. This sounded like a lot of fun.  

So, while it's a little after the fact, here is my entry for Darren's challenge:

• Your first post: Shift F10
  
• A post you enjoyed writing the most: Aftermarket add-ons for your wheelchair
• A post which had a great discussion: 100 things...leading to a single choice 
• A post on someone else's blog that you wish you'd written:  How to pissed off the fatally ill written by the fabulous Carla Zilbersmith, who lost her battle with ALS earlier this year. 
• Your most helpful post: Project Gift Box - Organizing Yourself
• A post with the title that you are especially proud of: Hey Papa....I'm doin' OK! 
• A post that you wish more people had read: I had a tie here! Kids and ALS and Why Does Fundraising for ALS Matter...Really?

This was a fun challenge to complete! I urge you to check out some of the posts, then head over to Darren's site to check out other entries.   If you are a fellow blogger, consider sharing your entry with me and I'll check out as many as I can.  If you enjoyed this post, please leave a comment or become a subscriber. 

Thanks for reading!

Off the Bench…Back in the Lineup Again!

I am a huge baseball fan! And…even though they regularly break my heart, I remain true (29 years and counting) to the orange and black jerseys worn by the San Francisco Giants. My brother, an equally devoted Oakland A’s fan, and a few other friends have offered to pay for therapy! Hopefully, this bit of insight into my psyche sets a context for this post.

I’ve missed writing. I’ve been on the bench for 6 months after taking an “I found a lump” curve ball to my left breast on January 21st. Four little words that have significantly changed my strategy to playing this game called life. Turns out, I was lucky to get a “brush back” which allowed me to assess my life and make some changes, so that I have the stamina to stay in the game.  Here are just a few of the life lessons I’ve learned from baseball and my time on the bench:

• In January, when it’s still gray and icky, my heart leaps hopefully when I can start counting the days to spring training, along with all of the sports pundits. Hope springs eternal in January – it’s a new season and this could be the year we go all the way!  Every 365 days, I get to be hopeful - to start over to reach my personal dreams.
• There’s a lot of strategy to baseball. Pitching rotations and match-ups; hitting lineups; officiating; home or away; number of days on the road, and so much more. Same as life. Lots of things to consider when making changes, but it helps to know my team, how rested I am, am I on my home turf or on the road, what/who can I always count on?
• It’s a team game that takes 9 players, plus a cast of back-ups. And…any one player can be the hero or the (scape)goat for any given game. I’m only as good as the people I surround myself with.
• One game does not a season make. One has to shrug off a bad break or performance and mentally get into the next game fast. There’s never a lot of time for boo hoo-ing or second guesses. Equally important, a good performance today, does not guarantee a good performance tomorrow!
• Each player is a specialist, but there are times when opportunity knocks and one needs to abandon specialty to get the job done.
• 168 games makes for a long season, so players must have endurance and be resilient to make it through a full season. Health, training/preparation, attitude, support and flexibility, all play into one’s ability to make it through a long season.
• The game is on the field! Fans and coaching makes a difference, but in the end, the coach and fans are not on the field, the players are. If it is to be….it’s up to me!
• For a variety of reasons, players can spend a lot of time on the bench and not on the field. No one wants to be on the bench any longer than they have to! Time off is good. Too much time off is not good – at least for me!
• From a purely biased perspective, San Francisco has the cutest little ballpark in the league, and where else but a ballpark, can you enjoy beer, friends, and the smart crack of a line drive? It’s good to remember to stop and smell the roasted peanuts!

Six months has brought many changes and insights which are great topics for a blog about meaningful giving. For now, I am ready to play ball, so I’ll see you on the field - or in this case - on this blog!!!  For all the baseball fans, what are your favorite ballpark memories? What life lessons has baseball taught you? Please comment and share your stories!!

If you are interested, my CaringBridge online journal chronicles much of my personal journey with my breast cancer diagnosis.

Photo by Backpacker.

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

Patients with Pluck!

From the Yahoo Education dictionary, I found the following definition for the word "pluck"

"Resourceful courage and daring in the face of difficulties; spirit."

And PLUCKY would be the best one-word description for 3 ALS patients, each far too young to have this shitty disease, whom I have come to admire and consider as personal heros.  They have truly taken the lemons life has handed them, added some salt and tequila (the 100% Agave GOOD stuff!) and done shots!  While they are still around to read these words, I offer the following tributes.

Carla Zilbersmith is a singer, actress, mom and a hell of a funny woman!  She lives her life out loud and ALS is just one of the many facets of this extraordinary woman.  Read Carla Muses regularly for a funny, irreverant and emotionally engaging look at her life, which just happens to include ALS.  I often wish that our paths had crossed when Bill was still alive.  I can only imagine their friendship and possible collaboration.  Maybe....in heaven!?  Her latest post "A Cripple Danced at a Gay Cowboy Wedding" is not to be missed.

Jason Picetti is young, smart, a self proclaimed nerd/former math teacher and writes the blog Adventures of ALS Boy.  Jason teamed up with Carla and was photographed, wheelchair and all, surrounded by a bevy of very sexy looking young women.  All in the name of raising awarenss for ALS.  "We're Bringing Sexy Back" is his account of the recent photography session.  Jason, like Carla writes from the heart.  "Last Call" is just one of a hundred+ gifts of insight that will allow his baby girl Emma to know the dad that will be taken from her too soon.  His wife Fehmeen is gracious and shares Jason's ability to look at the funnier side of life. 

Last, but certainly not least is Sarah Ezekial who has made it her life's work to raise ire and eyebrows, as well as awareness for ALS or MND (Motor Neuron Disease) as it is known in the UK.  Sarahville is one of my new favorites for a variety of reasons....but mostly because, like Carla and Jason, Sarah doesn't flinch.  She tells it like it is and isn't afraid to shake up the status quo.  Please take the time to read "MND is..." including the embedded link to "Is my pain really too shocking for television?".  The advert (in America we say commercial, but advert is so much cooler!) "Sarah's Story" is brave, direct and has created a lot of conversation...proving once again that one person can indeed make a difference.

Who are your ALS heros?  Cheers!

http://www.flickr.com/photos/sheeprus/ / CC BY-NC-ND 2.0

Developing YOUR Story - a few tips/tricks

My best friend got married this past Sunday and as her coordinator, I have been consumed with ALL things wedding related.  It was a GORGEOUS wedding, perfect in every way.  So....now I'm back to the real world and realize that a month has passed without a new entry to Defeat ALS.  My how time flies!

In the past, on a number of different occasions, I've mentioned "telling your story".  Generally it's been in the context of advocacy and involvement with changing public policy.  I believe you need to be able to tell your story, in a concise and compelling way so that you can inform and educate, whenever the opportunity presents itself.  With ALS, this is particularly difficult, but critical, since few people know much beyond how to spell ALS.  Each time I talk about developing a story, I get a blank look or the question "how do I do that?"  It's hard to tell someone else how to write their story....I don't have the same perspective, experience or voice.  And besides....it's not my story to tell!

A few months ago, a childhood friend referred on of her friends to me for support, following the loss of her father to ALS.  Today's post is my response, which includes my thoughts on how to develop and tell your story.  I hope you find it helpful as you document YOUR story.

Dear Denise...

It's taken me a couple of days to think about your question and to (hopefully! answer in a thoughtful way.  I'm thinking that the true goodness of Facebook is that we don't actually need to know each other - we can be brought together by a mutual friend.  Because we share a very special bond - I'm pleased to "meet" you!  First I'm so very sad that you lost your father to this s^%&ty disease.  While there is never a "good" time to lose someone you love, I'm sure that losing him just before you delivered your daughter was especially difficult.  I can't imagine that pregnancy hormones and the joy of a new baby mix very well with grief.  Thank you for your kind words regarding my husband.  This is an especially difficult time of the year for me, so I truly appreciate your thoughtfulness.

Congratulations on making the decision to participate in the Idaho Walk to Defeat ALS.  I found the walks a good way to channel my grief - I had something to focus on besides a broken heart.  The walks are also a good way to organize friends who want to help you.  Unfortunately I'm going to agree with your friends and tell you that telling your story is the best way to educate people about the disease and to work through your own grief.  You don't really have to go into anything long or drawn out.  the good news is that the story will get better and your delivery will get easier over time.  Interestingly, this was one of the Twitter messages in my inbox this very morning!

"@schwerdtfeger:  Speaking: Don't look for grandiose stories.  Tell stories about YOUR life.  The audience will connect with the emotions you describe."

Your ultimate goal is to educate people about the disease, share your experience, talk about what the ALS Association does to help people with the disease and then ask them to help you honor your father by supporting the good work done by the association.  I believe your focus on raising money to find a cure will ultimately help you speak.  Here are a couple of points to consider as you craft your own story.

When I share my story, I will generally start by asking someone if they are familiar with ALS.  Depending on the answer, I might add, "You may have heard it called Lou Gehrig's disease."  90% of people will recognize it then.  Lately I've added that we just celebrated the 70th (yes 70 years!) anniversary of the famous speech give by Lou when he retired from the Yankees in 1939 because he was too weak to play ball.  You may have heard the speech.  I call it the "luckiest man speech" and there are lots of versions out on YouTube or the Lou Gehrig Wikipedia page.  Major League Baseball did a pretty big push earlier this month, so folks may have seen some of the stories and advertising.

I talk briefly about the statistics.  In the US, 16 people will get an ALS diagnosis today and 16 others will die from ALS.  One person every 90 minutes.  Less than 10% of the cases are geneticly transmitted and veterans returning home from mid-East conflict duty are twice as likely as the general population to receive an ALS diagnosos.  ALS is truly non-discriminatory.  It strikes young (17), old (83) and everyone in between.  My husband was 49 years old when he was diagnosed.  Whenever somebody asks me "why?" to any of these questions, I am hones and say I don't know.  Scientists are working on it, but there's been little, significant progress.  And I'm getting pretty impatient!

Then I move into helping people understand the disease.  I recently came across a wonderful analogy that people "get" right away.  Talk about "...being on the beach with sand for miles around.  We've all seen the dads who allow their children to use their plastic pails and shovels to bury them in the sand.  When the children finish the project they are generally happy with their work and the dad looks indulgent.  You see the dad's head sticking out of the sand, he's fully aware of what has happened/is happening, but cannot move anything.  He cannot even get out of the sand by himself".  Then you can say...."imagine what that might feel like."  And then let that sit in the air for a couple of seconds.  Then you can quietly say, "that's what it was like for my dad."  I promise you, people will have a new understanding of ALS!

You can then share a quick story of what it was like for you as a caregiver and how hard it is for you that you lost your dad before he could even hold his first grandchild.  Your daughter will grow up with stories about her grandfather, but won't have his knee to climb up onto to share a story.  Carry tissues for a while, this part will be hard, but it really helps people connect with you and your loss.  Take a deep breath and settle yourself.

I would then talk about the walk and why you are asking for money, especially in these tough financial times.  I find that talking about honoring my husband's memory works pretty well.  I also talk about the support groups and regional care managers funded by the association.  If your dad benefited directly from the services offered by the chapter, PLEASE SHARE this information.  Talking about the good work done and how you/your family personally benefited, makes it real!  I will sometimes talk about how expensive the disease is, especially in the late stages, often running $225K annually for equipment and full-time skilled care.

Finally, I come back to Lou Gehrig.  I ask people to think about the diseases that have discovered, in the past 70 year...like AIDS, Breast and many other types of Cancer, Parkinson's, MS, Swine Flu and more.  In our lifetime, researchers and scientists have been able to find what causes these diseases, created tests for early detection, have found therapies to help patients manage symptoms and to extend life and/or live relatively normal lives.  None of this has happened for ALS.

I then ask them to walk with me or to go to the website and sponsor me.  I talk about the walk and joining Bill's Brigade.  If they can't walk, I ask for sponsorship.  I've taken checks for $25, $50 (and more!), but lately I am asking people to think about a regular monthly pledge of $10.  It's only $2.50 per week, less than a fancy coffee drink at Starbucks, but it really means a lot to the chapter to support their work.  Most people can find $10 a month in their budget and not miss anything important in their household.  But $120 annually to the chapter is significant!

I can also tell you that this is a very effective way to craft an email campaign.  Go to the Walk website, register a team to honor your dad, and then us the email tools provided by the chapter to send "your story" out to all of your friends/family via email.  When I use this method, I thank them for their support and ask them to pass the email on to their friends and family. SOMEONE else has been impacted by the disease and will want to help you out!

I sure hope this helps!!  You are in my thoughts and prayers and I appreciate your trust in reaching out to me.  Please give my best to Brenda.

Kathie

ALS patients are not babies...

I've become a fan of Carla Zilbersmith.  Which actually kind of sucks for me because I didn't know her before ALS and would have really liked to.  My loss.  My only consolation is that I am able to read her blog, admire her joie d'vivre and truly appreciate the tremendous effort that goes into each of her narratives. Her recent post, Big Baby on Carla Muses had me laughing AND crying as I recalled some of the caregiver/patient moments I experienced with Bill.  My post today is from the opposite end of the continuum.

For the record, we did not have babies, we had a three year stint as legal guardians for three 16 - 19 year olds.  My skills were just as limited and impatient as Carla described, so you can only imagine the conversations between the two control freaks living in our house!  To Carla's point, it is painfully frustrating (even without factoring in the potential humiliation) to be an adult who is no longer capable of operating independently.  It is all too easy to treat an ALS patient or an elderly relative as if they are a small child, even when we are fully conscious of the fact that they have learned full well how to dress, bathe, drive, and more.  Please repeat after me:

It is not ok to treat an ALS patient like a baby, not even when or if they are acting like one.  ~William Neil Lichtig

Each and every day some bit of independence is stolen from these loved ones, and deposited into the hands of a well intentioned caregiver.  And it happens of necessity, not because you and the patient came to some sort of mutually agreed to arrangement! 

Take a minute to reflect on what it might be like if the circumstances were reversed.  Would you be a "good" patient?  Would you trust and allow your spouse, child, parent to be your caregiver?  How would you negotiate the boundaries and know when to speak up or shut up? 

Think about it.  When you are rushed, it is much easier and certainly more efficient to put the shoes and socks onto a pokey toddler who is learning to dress on their own.  However, we cheat them of the opportunity to learn independence. It's natural to yell "hurry up" when someone is dawdling. After all, there are place to go and people to see and we're on a schedule.  In the same way, it's easier and much faster to do everything for the ALS patient you are caring for, ultimately shortening the dwindling thread of their independence and cheating you of some much needed respite!  I am not for one minute suggesting that you allow anyone, child or adult, do anything that is dangerous or will result in serious injury.  But I am suggesting that it is in your best interest to slow down and work to encourage/retain independence for as long as possible. 

I consider myself pretty fortunate that Bill was able to adjust quickly to his circumstances and remind me ever so gently (...not!) of what he was still capable of doing.  He could no longer manage the wash, but he could handle the dryer.  He couldn't carry groceries with his hands/arms, but if I could hang the bags onto the handles of his wheelchair or the boxes of soda onto his lap tray, he could zoom up the ramp into the house while I secured the van and he would keep me entertained as I put things away.  He could still carry his share of the load, and sometimes all of it!  

I learned to make myself scarce but stay within earshot so that I could protect myself from the heartache of watching my husband struggle to button his shirt, brush his teeth, walk any distance or any one of a hundred other little tasks.  I learned to tell him he had to do the best he could while I took care of something else.  And I learned to ASK him first, to see if he really needed my help to complete a task.  We learned to build more and more time into the schedule to accomodate his needs and capabilities.  And just as the world doesn't stop spinning when the kid goes out in mis-matched socks because everyone was rushed, it didn't stop when it took us an hour and a half to complete the grocery shopping instead of  45 minutes!

Caregiving is a full-time gig.  It's demanding and generally exhausting work.  Change is not easy. Work together and do not willingly make this job any tougher, any sooner, than you have to.  It would be great to hear how you manage this delicate dance.

Calendar Girls (and Guys!) for ALS

Carla Zilbersmith is extraordinary. And...she has a great idea!  I am posting this to help her find the 11 patients she is looking for!  Please contact Carla directly if you are game to join her!

TO FELLOW ALS PATIENTS:

My name is Carla Zilbersmith and I was diagnosed with ALS in December of 2007. I have been thinking about something I would like to do to both raise awareness and raise funds for ALS research but I need the help of 11 other bold people with ALS.

I would like to create a cheesecake calendar using ALS patients as models. I’ve seen calendars like this to raise money for cancer but they have always used friends and family members instead of the actual people living with the disease. I don’t know about you, but I don’t like to be marginalized because of the fact that I’m in a wheelchair or that I slur my speech a little. I feel like I’m the same person inside and I am forever looking for ways to remind people of that fact.

Here’s what will happen: If you’re even remotely interested in participating in this project, you will email me at carlazilbersmith@yahoo.com with your questions as well as any concerns that you might have. I will arrange for a photographer or photographers to take our pictures and wrangle someone to help with hair, make-up, and clothing (Obviously, men won’t need make-up and bald people won’t need hair styling). The photo shoot should take no more than 2 hours of your time including make-up. None of the pictures will involve nudity but they will be provocative. You don’t have to consider yourself “hot” to participate and ideally people at all stages of the disease from not even needing a cane to using a ventilator will be part of this. I want to show the world that we are more than a disease. I have been in the entertainment business for over 20 years and I know what I’m doing, so you can trust me when I say I promise you will not be embarrassed by the picture we choose and you will not have any pictures taken that you aren’t comfortable with.

I will find a printer and a graphic artist to donate their time to creating the calendar, which ideally should be ready by Thanksgiving so absolutely everyone can buy several as Christmas/Hanukah/Kwaanza presents.

I hope you will consider being a part of this project. We won’t raise millions of dollars but we will cause a stir, make some money, and let people know that we are alive and kicking until we’re dead. Thanks for your consideration.

Carla Zilbersmith