100 things, leading to a single choice

Last week, the LA times published a beautiful piece written by Martin Welsh, who is the cousin of Jared Gill, one of my fellow ALSA board members.  I was truly moved by the piece and asked Martin if he would agree to be a guest writer for DFTALS this week.  He agreed and I am thrilled to share his thoughtful essay. 

 

By Dr. Martin Welsh
July 26, 2009 

“I am a 55-year-old retired family doctor with a large, loving family and innumerable friends and former patients whom I see often. I am an extraordinarily lucky man.  For the last five years, I have also been a patient. I have ALS (or Lou Gehrig’s disease), a cruel neurological illness in which a normally functioning intellect becomes trapped in an increasingly weak and eventually paralyzed body.   Soon, I will die from it. 

 Through my career, I tried to honor my patients’ end-of-life wishes. But after a quarter-century as a firsthand witness to death, I’ve developed my own perspective.  It’s not that I’m a quitter. I have struggled against adversity of one sort or another all my life and those challenges have helped prepare me for what I face now. I still delight in accomplishing difficult things, and I always wear a bright red ALS wristband that says “Never Give Up.  “That said, there will come a limit. I have made it very clear to my wife, my family and my doctors that I want no therapy that will prolong my suffering and lengthen the burden on others. I do not want a feeding tube nor a tracheotomy when the time comes that I can no longer eat, drink or breathe for myself. 

 Physicians and families sometimes feel an obligation to do all that can be done to keep someone alive. I believe this is based in equal measure on a fear of death and on Western medicine’s increasing ability to prolong life near its end.  I was able to diagnose myself at a fairly early stage of the disease. My case was slower to progress than some, and so I was able to keep working as a physician for nearly two years. During that time, I was enormously grateful — for my patients, for sunsets, for golf games with good friends. Life has been truly wonderful, even as I have slowly lost the use of my hand, then an arm, then both legs and my speech.  But as much as I have stayed focused on what I am still able to do, it has become harder to ignore the  things I am losing.   Today, my guitars sit idle. I haven’t used my stethoscope in years.  My jogging shoes gather dust in a closet as I watch my belly grow from lack of exercise.  I remember the last time I tried to shoot a free throw with a basketball and I was five feet short of the rim.

 Today, I find myself facing the kind of “quality of life” issues I discussed innumerable times with my patients.  Answers vary from person to person. But the fundamental question is always this: At what point is the quality of life no longer worth the emotional and physical costs of maintaining it?  I am not afraid of dying or death, and that is a wonderfully comforting thing for me right now. I have seen so many “good” deaths in my time as a physician that I know this passage can be peaceful, spiritual and even comforting to those left behind. I hope for such a death.
I have also started to think about how I will know when I am ready for it. To that end, I often think about what I call the “100 Things.”  Here’s how it works. Imagine a list of 100 things you do most days. Some are routine, some are “chores,” some are pleasurable. Get out of bed and walk to the bathroom. Kiss your wife. Answer the phone. Drive your car to work. Go play golf with your friends. Brush your teeth. Write a letter, lick and seal the envelope closed and put a stamp on it. Hug your child.  Of course we do many more than 100 things each day, but for now, just imagine 100 that are essential to the life you live. Now if you take away one, you can still do 99. Is life worth living without being able to smell the rose in the garden? Of course it is! How about losing two or seven, or 23 — is life still worth living?  Of course! 

 But suppose you get to where you’ve lost, say, 90 things, and now with each thing taken away, a bad thing is added. You can no longer walk well, and you start falling, and it hurts. Your grip is gone, and you also suffer the ignominy of wetting your pants because of bladder spasms. You can’t turn over in bed, and that also means you will get bedsores unless someone turns you frequently. Life is still worth living, but you’re getting tired.  At some point, no matter who you are or how strong, you can lose enough things that matter — and acquire enough negatives — that the burdens will outweigh the joys of being alive. This is the stage when, as a doctor, I would reassure my patients and their families that they had fought the good fight and it was now OK to accept moving to the next phase.

 I know I will one day reach that point.  And that’s why I worry about feeding tubes and ventilators.  It has been my experience that these things are at times started almost automatically, and once they are started, they are next to impossible to stop. I have seen too many unfortunate people kept alive for years in hospitals or nursing homes, beyond all quality of life. Sometimes it causes untold stress in a family. Some of these cases even have made national news, and, unbelievably, our government and some national religious leaders even weighed in, as if they had a right to do so.  I worry that at some point a feeding tube, or other artificial substitute for a basic body function, will be medically “indicated” in my case. Intervention at that time might seem to make sense to those around me. But the result may be that I am kept alive only to count off the remaining things on my list of 100, such that I am forced to live well past where I would want to say “Enough.” 
I like to know where a road leads before I set out on a journey. Right now, one path I could take leads to a place I don’t want to go. I am determined not to start down that path, even if others think I’m being premature in my decision. In short, I may well be ready to die before my family and friends are ready to say goodbye. But they know that, as I face my diminishing list of the 100 things that make life worth living, the choice of quality over quantity has to be mine to make.”

 

Reprinted with permission, this article was first published by the L.A. Times, July 26, 2009.  Martin Welsh grew up in Los Angeles and graduated from UCLA Medical School. He now resides with his wife in Camino, Calif.

Material Things Don’t Matter

I know, we’ve all heard it! But it’s really interesting when you finally “get” it. I’m not great with my ability to totally recall bible verses, but I know there is a passage somewhere that goes something like “ashes to ashes, dust to dust, we shall all return to our maker”. Frankly, I’m a 70′s girl and think that the band Kansas got it right with “Dust in the Wind”, one of my all time favorite songs to belt out in the car….but I digress.

 

Because, we had a year to spend together and say our goodbyes, Bill and I had the chance to talk about what he wanted, what his life would stand for, and how he wanted to die. At first I was pretty “creeped out” – no one rationally chooses to talk about death, the meaning of life and how you want to be remembered! Do you?? But once he convinced me that he was serious, I swallowed hard and agreed to just listen. Turns out, it took the full year, but it was one of the smartest things I ever did! For the record, it’s not easy to have these conversations, but for me, I received the ultimate peace. I didn’t have to guess or wonder what he wanted….I already knew.

 

My husband was a firefighter for 20+ years. He loved his job and was really good at it! He left the department and went to work for Sprint PCS. Again…he was really good at what he did. Up until the day he went on disability, he was actively working with emergency service providers to fine tune the response program for 911 calls from your cell phone in Northern California. Over the years, he touched (and saved) a lot of lives. But he often wondered if it was “enough”.

 

Bill was part of a UCSF memory and aging study, conducted by Dr. Bruce Miller and his extraordinary research team. The sessions were informative and fun – something to look forward to. During one visit, because of the family history of ALS and FTLD, we were asked to consider “gifting” his brain and spinal cord to the research program. It would be autopsied and contribute to the ongoing research. After talking it over, Bill decided that if he never did anything else with his life, at least he could consciously contribute to the process of trying to find the key to ALS and FTLD. Turns out, for him, that would be enough!

On our next visit, we agreed to the donation and signed the necessary paperwork. We were all finished and as we were about to leave, the program manager, after thanking us profusely, asked “what would you like to do with the rest of the body?” eeeeeeeeeeeerrrrrrrrrhhhhhhhhh What?! Turns out, they really wanted JUST his brain and spinal cord. In true style, he quickly typed the following response on his laptop…”Well, I’m not gonna need it!”. They looked at me and I (equally as quickly!) assured them that I did not want it! Lucky for us, the University has a Willed Body Program. It’s awesome! We signed the additional paperwork and never looked back. (side note:  I have since completed paperwork for myself and that feels pretty great!)

 

As the ALS progressed, we talked about everything and he even helped with the arrangements for his memorial service. His only request was that when he died, he wanted to make sure that his “never give up” silicon bracelet and his golden retriever, beanie baby went with him. It’s a long story about the beanie baby, but suffice it to say, it was important! We ultimately had to leash the beanie baby to his wheelchair to make sure they were always together!

 

On August 10, 2005, Bill passed peacefully in his sleep. Emmy, the angel aide from hospice, arrived in the early morning to give him his last bath. After a quick discussion, it was decided that he didn’t need any clothes – that a clean sheet would suffice for his final ride to the University. That was it! He came into the world with nothing and would leave in exactly the same way, with 2 small exceptions. Truly, material things do not matter in the final hour.

 

The rest of the hospice team arrived to help me through all of the final details. And finally the team from the University arrived, carefully and respectfully loaded him onto the gurney, covered him with a bright blue, stretchy cover and escorted him back to the university lab. For all that it was sad, the process was actually pretty wonderful. I had little to think about and I was comforted to know that he was in good hands, doing exactly what he wanted to do.

 

Later that evening, as my head finally hit the pillow, I had a chance to think about the day. I felt really good about the decision to donate, but…I had this random thought! And…from time to time, I reminisce and wonder about the student who opened the drawer to begin the autopsy. I can’t help but wonder if they thought “hmmmm, naked guy with a bracelet and a beanie baby. I’ll bet there’s a good story here!”

 

In the end, it’s not the material things that matter. I believe it’s how you lived your life, thought of others and made people smile.

Kids & ALS

I think sometimes we work too hard to shield children from the difficult circumstances of life. I don’t personally think it’s right to frighten children by initiating conversations they aren’t curious about, or overwhelming them with so much information they are in tears of confusion. But I think we do them a disservice when we hide or whitewash the natural order of life.

• Q: Why is Mr. Bill in a wheelchair? A: His legs don’t work so well anymore.
• Q: Why? A: Because his brain can’t talk to his legs to make them move.
• Q: Does it hurt? A: Nope!
• Q: Will he get better/walk again? A: No
• Oh.
• Q: Can I look at the laptop? A: Sure!
• Q: What’s he saying? A: Why don’t you ask him. He can hear/understand you and he’ll answer any question you ask!
• OK!

Bill’s laptop or “talkie” as we came to call it, was an endless source of fascination and information for the neighbor kids and their parents. In my experience, kids understand a lot more than we give them credit for and are very quick to adapt to changing circumstances, generally without intervention from adults! The kids naturally adjusted to the wheelchair and to Bill’s funny, computer generated voice. It was the most natural thing in the world after we explained the basics. I will always be grateful to whatisals.com

for the kid-friendly explanation posted on their website.

The kids figured out a rotating schedule among themselves to help me walk the dogs. Sometimes they would invite Bill to “walk” with them so they could ask their questions, knowing that Bill would answer honestly. I would often hear laughter, because that was his style and because a computerized voice is naturally funny!

Sometimes we would lose track of time and we’d have parents knocking on our door to collect their

kids for the evening. In the early days, they would be aghast at the questions asked (you know how direct children can be!) and try to “shush” the kids. Bill would quickly re-assure the children that he would answer the question, inform the parents that there were no issues and then set about to patiently and carefully answer all of their questions. He always answered honestly and in an age-appropriate manner. It was truly a wonder to watch.

One of my fondest memories is the day he actually died. It had been a full day and I had dinner with friends in Orinda. I came home and parked the van in the driveway. Most of the kids were out playing, enjoying the freedom of late night play that only comes in August when there is no school. They all ran to the driveway and when the ramp didn’t drop, the older kids instinctively knew he was gone. Zack…a lively and curious 6 year old asked the question on everyone’s lips…
Z: “Hey….where’s Mr. Bill?”
K: “Well Zack, Mr. Bill is in heaven.” (I knew I had a choice to tell the truth or paint a story. I chose the truth and will always be glad I did.)
Z: “Heaven….all dogs go to heaven” (long pause as he looked around at the older kids starting to tear up) “That was a really sad movie”
K: “Zack…you are so right!”
Other kids: “Mrs. L., can we come in?”
K: “Sure, but you need to tell your folks where you are”

 

And that was that. About 10 minutes later, many of the neighbors came back to the house with their children to pay their respects and ease into their grief by reminiscing. As Zack’s older sister Michaela came into the house, she spotted Bill’s empty wheelchair, and without any hesitation, went to the chair and said her goodbyes to Bill by gently kissing the small bunch of silk daffodils anchored to the back. I’m sure she had no idea I was an observer to this fleeting, selfless, authentic gesture, but I will always remember her gentle manner and my gut reaction of “kids “get it” if we just give them a chance!”

During Bill’s illness, the children in our neighborhood ranged in age from 3 to 18 with the majority falling between 8 and 13. Initially I was pretty nervous about answering the question “what’s wrong with Mr. Bill?” Bill, God bless him, set me straight. “It’s just like talking to adults, only just a little different. You need to listen more carefully, answer only the question they ask and use simple words”. OK….great! As usual, he was right! Here’s an example: