Tuesday, May 26, 2009
When I first signed up for Extra Hands for ALS, I thought it would be a nice way to spend free time, volunteering with real people and trying to make the world just a little better. I had no idea that the day I walked into 1847 Linwood Drive would forever change me. Extra Hands for ALS is a program through which patients with Amyotrophic Lateral Sclerosis (“ALS”) are connected with volunteers who help them accomplish things they no longer have the ability to do on their own. ALS (commonly known as “Lou Gehrig’s Disease”) is a heartbreaking and debilitating disease that slowly deteriorates a person’s motor functions yet leaves the brain untouched, in effect holding them prisoner in their degenerating body until they die. ALS is a terrible disease, both for those who have it and for those who must watch their loved one slowly die in front of them. Yet to die from ALS is relatively easy compared to living with it. It requires an amazing strength and bravery, and an acceptance that our time alive on Earth is not guaranteed. Although he knew that this disease was terrible in every way, my patient Bill Lichtig lived with it with an uncanny dignity and was able to indirectly use the disease to teach me amazing life lessons. And he has changed me forever.
The day I met him, Bill wore glasses, had a cane resting against his knee and two golden retrievers lying at his feet. He stood up to shake my hand in greeting although I could see it pained him to do so. This was my first glimpse of what I learned was his steadfast resolve to live despite his disease, an amazing bravery I hope to one day see in myself. Bill has left me, but he leaves me with resonating lessons about three things: love, life and laughter.
Bill was a lover, of people, of life, and of laughter. You cannot just teach someone about love, but you can show them. Bill showed me that you must let people love you, even when you do not want to. Bill’s wife, Kathie, was his primary caregiver. This meant that she was in charge of feeding him, among other things. Seeing Kathie fearlessly feed Bill through his feeding tube truly showed me love. She chatted with him about unimportant things while she did it, I guess in an attempt to show him it was not a big deal to her. Yet through that action I could feel the outpouring of true, deep love they felt for each other. Kathie could have had a nurse take care of Bill, but she did not; Bill could have told her he wanted a nurse so as to not inconvenience her, but he did not. Bill allowed Kathie to care for him because he loved her, and Kathie never stopped nursing Bill because she loves him. There is a song by a band I like, Death Cab for Cutie, who sings a song with the lyric: “Love is watching someone die.” When I first heard those words I instantly thought of Bill and Kathie, who have taught me more about love than I may ever learn the rest of my life.
Besides love, Bill also taught me about life. One day, before he could no longer comfortably chew them, Bill was enjoying his daily snack of Oreo cookies and he said to me: “Cookies fix anything.” While unfortunately cookies could not physically cure Bill, they symbolized a deeper meaning. Cookies were all the small things Bill did to enrich the last part of his life. Sitting outside in the sun, petting the dogs, even sniffing the air in the kitchen as I attempted yet another meal under his instruction. Bill showed me that focusing on small, positive things can help you ignore large negative ones—or at least keep them from ruining your day.
One day Bill, who liked to speed in his motorized chair, was enjoying wine through his feeding tube. He told me if a cop pulled him over he was fine because he could truthfully say: “Officer, no alcohol has touched my lips.” I know his mischievous humor kept him alive when he no longer had the physical strength. This alone proved to me the importance of laughter, and he made me laugh constantly. Once he could no longer speak himself, he used a computerized voice, although typing was tedious and frustrating for him. He maintained his dignity, even when others were not so understanding. For example, he was sometimes mistaken for a prank caller when using the telephone, but his strength to even recount these stories to me displayed an undaunted will to fight his disease. A coward would be embarrassed by such an event, but not Bill—by reliving the experience he was showing everyone he was still here, and still strong.
The most important lesson I learned from Bill came when he told me: “Yes, this isn’t an easy disease to live with. But there’s nothing I can do about it. I can either spend my days crying or laughing—and I choose to laugh.” This statement concisely sums up what I learned from Bill. I learned not to let small things, like forgetting an item on our grocery list or messing up our projects, ruin my day. I learned to see a small mistake as just that: a small bump in the road rather than the end of the world, as I used to do before I met Bill. He taught me that so much of life is mistakes. Who we are is based on how we deal with those mistakes and how we react in the life’s obstacles. We can cry or we can laugh, and it is always better to laugh.
Bill also taught me how to die. August 10, 2005.
Monday, May 25, 2009
Friday, May 22, 2009
The reality is, while he is never any farther from me than my own heartbeat, my best friend and life partner Bill will never again share my bed, tease me about my terrible joke telling skills, "handle" the bugs and rodents that occasionally show up or even send up his distinctive "meow" because I've wandered away from him in the grocery store and he can't find me. This, and oh so much more...I miss.
So...each and every day I have a choice. I can (attempt to) stay firmly rooted in the past, where it's familiar, where I would like to be. Where Bill and I were - together. I can stay in bed, under the covers, and let the world go on its merry way. I don't have to participate and you can't make me. (sound like a petulant 3 year old you know?!) I did in fact, choose this option in the first days and weeks following Bill's death. I can definitively tell you that it's dark and not particularly interesting under the covers!
So the only real option for me seems to be - put on my big girl knickers and a brave face, pack a snack and hit the new road. I've learned and come to appreciate, that if I am nothing else...I am resilient. I am not wired to live in the past....I live in the here and now. Unfortunately, I'm told that I make grieving look easy, or worse, that I didn't grieve at all?! For the record, I grieved along the way. Every day, some new bit of functionality was lost and Bill had to hand that off to me. Trust me, we both cried.
So the question is, how to keep the bravery going? Just as ALS has its own path with every patient, so the recovery path is different with every survivor. With Bill's passing, I knew that fundamentally I was different. But when I looked in the mirror, I saw the "same" me. I would get tripped up and start the crying all over again. And we all know what that looks like! After a good cry, you can't breathe, your eyes are red and swollen, your nose is runny and red from blowing, you have a raging headache and in general...look/feel like crap! Great!? How would I ever break the cycle?
For me, it was a change in haircolor. I will forever be grateful to my hairdresser, and good friend Alisa who mixed her magic and transformed me from blonde to the red I should have been born with. This one small change put me on the firm road to recovery. We did not get the red "right" the first time, but the change was transformative. Each time I looked in the mirror, I literally saw a new person. In time I began to think differently. I began to act differently and with each baby step, I got stronger and more confident in my new path. It's not always easy, but each day it gets easier and I have never looked back. Thank you Alisa...you are a genius!
SPECIAL NOTE: DO NOT TRY THIS ON YOUR OWN! Seriously. If you choose to make a significant change with your haircolor, go to a trained, certified colorist. Get recommendations and spend the money to have it done right.
Thursday, May 21, 2009
I had a conversation about a week ago with someone who agreed with my sentiment but shared a slightly different perspective. She said "I would love to have some help! I want help, I know I need help, but with everything I'm trying to cope with, I can't always articulate what I need. The truth for me is that when you ask me "what can I do to help you?", the offer is so vague, my brain goes into overload and I just can't answer!" Hmmmmm. We finished our conversation and went our separate ways.
A bit later in the day, I walked into a card store and was immediately greeted with "May I help you?", and the "how can I help" conversation came rushing back...in a flood. I've had extensive sales training over the years, and the #1 taboo in sales is to greet a customer with "may I help you?" It's too overwhelming and immediately invites the customer to put up his/her defenses. (All together now..."no thanks, I'm just looking!") In that instant, I understood what my companion was trying to say about offers of help.
The same way I've taught my team members over the years to greet customers with ANYTHING but "that sentence" (I've actually levied fines to retrain my forgetful team members!!!), I thought it would be helpful to share some specific alternatives to "How can I help?". This is a "starter set" to consider. Just remember the goal....narrow down the options for the patient/caregiver - so that you are much more likely to get a positive, definitive answer and everyone wins!
The photos in this post are of just a few of the many angels who inspired this post and came to my rescue....more than once!
- I make a mean tuna cassarole and my family raves about my spaghetti. Which does your family prefer? (Obviously, insert your personal specialties!!!)
- I am free to run the "kid shuttle" on Monday or Thursday. Which would be better for you?
- I have an hour on Saturday to pull weeds or mow the lawn. Which chore would you like to delegate?
- I can help you with household chores for about an hour - you know change beds, fold laundry, etc. How about Tuesday evening around 7 or Wednesday after 3?
- I can take the kids Friday or Saturday night for a sleepover, which works best for you?
Most of these suggestions require little or no planning and best of all, you can do them whenever YOU have the time, energy and inclination! Please keep your friend's temperment and your relationship in mind!! A word of caution...in the interest of fair disclosure: following any of these next suggestions is potentially risky! However, I am reasonably certain that even the most die-hard indivualists would appreciate it if you were to:
- Take your kids, a couple of rakes and some big trash bags and just rake the leaves in your friend's yard. or...Trim the hedges. or....Mow the lawn. or...Deadhead/fertilize the roses. Other???
- Shovel the driveway
- Safely, with a buddy, clear the gutters. or...Wash the outside windows. or...Wash a car left in the driveway.
When I was young, my gramdmother would patiently try and teach me the fine art of needlepoint. As you might guess, the operative word in the previous sentence is "try"! I've never gotten the hang of it! While I'm not great with needlepoint, I am very blessed to have inherited not only her name, but some of her creative talent. I feel very close to her whenever I am in my studio making jewelry.
Anyway....a few years ago, a co-worker gave me a new appreciation for needlepoint! As a metaphor to appreciate the beauty that lies in the trials of life. Cindy is a very devout Christian woman with her own special ministry. To help people understand the big picture, she frames her conversations in the context of needlework. Her theory...when you are the artist, your skill and confidence determine how you approach your project.
Beginners head to the local craft/fabric store and select a kit with an appealing design. The canvas is pre-printed and the yarns, colors, design and very often the tools are all neatly tucked into the package. Assuming the artist has even a modest amount of talent and patience, the finished project is pretty well assured and generally looks beautiful. However, if you've ever looked at the back side of a beginner project, you know that the view is less than beautiful. Knots, frayed threads, crossovers, slipped stitches, and more decorate the back of the canvas. Which is why beginners will inevitably head to the local frame shop and have the framer stick a piece of cardboard over the back....to cover it up!
On the other hand, if the artist is accomplished and confident, a pre-printed design is rarely, if ever selected. The artist gets an idea and then selects a blank canvas, the yarns and embellishments which suit the mood. Very often, timing and the yarns dictate the final design and I have seen my grandmother change her mind in the middle of a project! Only the most confident can do that and have it turn out to be anything in the end!! But even the most accomplished needlework artist still has her (his...my Great Uncle Ken did exquisite counted cross stitch!) knots, frayed threads and less than perfect stitches. Instead of leaving and covering up the imperfections, they will patiently work until the back is almost as beautiful as the front. There are still knots, but they are usually small and work into the grand design. The artist may even share the story of how the knot came to be and how she worked through it.
I believe in God. And this will sound presumptive, but I'm pretty sure God took needlepoint lessons from my grandmother! Here's the tie-in. We - as humans - are threads in one really big, gigantic tapestry and God is an accomplished and very confident artist. God does not need a pre-printed design, He ultimately knows the design for each of our lives. I, like Cindy believe that He knows exactly the colors (situations) and threads (people) to be used in the design for each of our lives.
Seriously....take a minute to think about this! He knows the joys and the sadness, the circumstances, the pain, the reactions....everything. Each and every person you come into contact with is a thread in your tapestry. Some are around briefly and add an accent. Some are in your life for a while, fall away and come back to fill in another part of the canvas. Others are in your life longer and create part of the focal design. Still others form the borders or add special embellishments. Each circumstance brings you into contact with more people (threads) for your special design. And you....are a thread in the lives of everyone you know or have come in contact with. (Kinda takes your breath away there for a minute!?)As we make choices, we potentially change the design. Yet He works with us to weave an incredibly beautiful, rich, colorful, tapestry that we each call a life. He directs the path, and is responsible for some of the knots and slipped stitches. But I believe that He is a patient artist and works to minimize the impact. But there are times, very often through our own choices and actions, that we are the ones creating the knots and loose stitches of our lives. We can work patiently to work through the knots or we can become frustrated and tie them ever tighter. We can turn to Him and count on his perspective to help ease the bumps and crossovers. We can learn to appreciate the beauty of the process or choose to look for something to cover up what we don't want seen.
To Him, it is all part of the grand design and it is completely beautiful....knots and all! To us...maybe not so much! I've come to believe the difference is perspective. He is always looking at the front of the canvas and we are looking at the back! What if we changed our perspective?
With so many of our military veterans, returned safely to loved ones, only to find themselves under attack from ALS, it is fitting to consider the following passage in the orignal General Order: "...Let us in this solemn presence renew our pledges to aid and assist those whom they have left among us, a sacred charge upon a nations gratitude the soldiers and sailors widow and orphan."
Please take a few minutes this weekend to recognize and thank (even silently) the men and women who have given their lives to defend and preserve our way of life. Better yet, take action and write to your representatives in Washington, DC. Ask them to support the 2009 Public Policy priorities set by ALSA National. Visit the Advocacy Action Center to learn more.
To read the full text of the General Order...
Wednesday, May 20, 2009
For several months, I've been writing a quarterly newsletter discussing various topics relevant to California ALS patients, more specifically, how to use the tools that are currently available to reach and inform legislators and the media. The newsletter has been limited to advocates in Northern California...so the natural progression is to move the newsletter to BLOG format!
Please check back regularly for news/tools you can use to bring ALS to the attention of your own elected officials. Use these tools to learn who represents you in Washington, in your state and in your local community. Get to know their staffers in the local office. Share your story. Help them understand ALS. Together....we can (and will!) make a difference.
Monday, May 11, 2009
Wednesday, May 6, 2009
Department of Neurology @ Emory University School of Medicine
"...We will be starting a clinical trial of a drug called arimoclomol (pronounced ari-mok-low-mole) for people with rapidly progressive forms of ALS caused by mutations in the SOD1 gene. " "If the genetic cause of ALS in your family is unknown, then we'd like to encourage you to contact us so that we can find out if the SOD1 gene is the cause. Please contact Cathy Raiser, study coordinator at email@example.com or (404) 712-8578." "If you have ALS and we can establish that a change in the SOD1 gene is the cause of ALS in your family, then you may be eligible to participate in this clinical trial. "
Michael Benatar MBChB,DPhil
Assistant Professor of Neurology and Epidemiology
There are a number of links to clinical trial sites. Here are a few I've found. Please feel free to add to the list.
Monday, May 4, 2009
Step by Step
Before you start, you will need your Zip +4 code. Launch your web browser and access the Public Policy Advocacy Action Center using the link: http://capwiz.com/alsa/home
Enter your Zip +4 Code in the search criteria boxes. Click the radio button marked STATE and click GO. The system will present a list of the elected officials who represent you.
Enter your zip +4 in the search box and click search. The system will provide a list of your State representatives.
--Veterans Page: http://www.alsa.org/policy/veterans.cfm
--Benefit Information & Eligibility: http://www.alsa.org/policy/article.cfm?id=1358
--Applying for VA benefits: http://www.alsa.org/policy/article.cfm?id=1357
There is much more content, but this is the “meat” of the home page.
What is ALS Advocacy? The support and promotion of ALS related interests, more specifically research, health & long-term care and caregiver support, at all levels (National, State, Local) of elected government. ALSA advocates work to effectively lobby Congress, the White House, and related national organizations, as well as state and federal agencies for funding and support of programs which will benefit PALS and their families. The true strength of the advocacy network is the dedication of the many individuals affected in some way by ALS. Individuals who have made the decision to make a difference today, so that the future can be brighter for PALS and their families.
Why is it important? Joining together to raise our voices on behalf of PALS, we have been able to accomplish the following:
- Presumptive Disability (and accompanying benefits) for Veterans
- Passage of the ALS Registry Bill
- Passage of the 24-month Medicare waiver for ALS patients and the presumptive disability ruling from the Social Security Administration.
- Increased federal funding for ALS research at the NIH
- Federal funding for ALS research through the Department of Defense
Who can be an advocate? Anyone with a commitment to help current and future generations affected by this horrific disease. Anyone willing to raise their voice or write a letter to an elected official. Anyone willing to make a difference. You!
As an advocate, what do you do?
- Join in (or start !) a social networking discussion
- Join the “Advocates for ALS” group on Facebook
- Sign up: http://www.facebook.com/home.php?ref=home#/group.php?gid=46567667530&ref=ts
- Become a Greater Bay Area Chapter Facebook FAN
- Sign up: http://www.facebook.com/home.php#/pages/San-Francisco-CA/ALS-Association-Greater-Bay-Area-Chapter/7265231215?ref=ts
- Join the “ALS Association-Greater Bay Area Chapter” group on LinkedIn
- Sign up: http://www.linkedin.com/groups?gid=1723587
- Join the ALSA advocacy team.
- Sign up at http://capwiz.com/alsa/mlm/signup/
-Find a walk: http://web.alsa.org/site/PageServer?pagename=WLK_BP_CA_eventlist
-Use the online tools to raise money for research and patient programs. It’s easy and fun!
-Pick your ride: http://www.ridetodefeatals.com/Pick_your_ride.html
-Use the online tools to raise money for research and patient programs.
-Register today: http://webba.alsa.org/site/PageServer?pagename=BA_volunteer
-There are LOTS of opportunities! We can find a job to suit your skills and time commitment.
- Learn the answers to FAQs
-Educate your friends, family, co-workers, everyone in your personal community. Get them involved!
-Share links to research, interviews, stories, events, clinical trials
-Post encouraging messages
[*ATE] – ALS…Together it Ends