We all know that there will be an end to our lives. Mostly we push it out of our day to day and ignore it. For most people age and increasing organ damage brings pain and a greater awareness of that long-hidden reality.
I got a letter recently from a nurse with a note that said Bonita has passed. She asked me to send you this and said you would understand. The letter held 3 wrinkled one dollar bills.
Bonita219 gave me a valuable lesson in coping with the inevitable.
A couple of years after we created FLF I was feeling like shutting it down. The desire to make a difference for patients hadn't dimmed but the reality of starting a nonprofit had become very clear. Most new businesses fail and nonprofits are harder to do than normal commerce. We exist on the kindness of strangers through grants and donations. Since we have nothing physical to sell for money, doing good is our only product.
We had spent a lot of time talking to companies who control mountains of money. The pharmaceutical industry is fed by rivers of cash and they speak of billions as easily as the politicians. We had had little success.
I don't wish to suggest that this is true for every pharma company and I'm not speaking about our friends. There are many good, earnest people in the industry who genuinely care about what patients experience. At the operational and above level, however, things are mostly transactional.
A typical experience is to request support and be assured that the patient voice is a key element of the company's strategy, and there is a real desire to support advocacy. Patients are one of the pillars of the business after all.
"That's great to hear. Might there be an interest in supporting our patients?" "Yes, of course, what you do is critical. You may know that budgets are tight right now. Lets stay in touch and maybe we can do something in the next budget cycle." "Oh by the way, can you help us find patients for clinical trials?"
The foundation existed because Rosemary and I willed it to exist. We gave it our life energy and paid the bills but after a year or two that wears thin and I was thinking about walking away.
It was during that time that Bonita219 entered my life. One day I got a letter with a short note and 3 dirty wrinkled dollar bills in it. The note thanked me for all the help we had given her as she battled her cirrhosis. Her church had given her a food basket so she had 3 dollars left over and hoped we could use it.
Think of that comparison. On the one hand are companies with vast financial resources who give me smiles and ataboys and on the other was an ill woman who sends me her last 3 dollars. Her gesture was so impactful that I never had another thought about chucking it all because it was too hard. Patients deserved whatever we could provide.
Bonita219 sent me 3 dollars from time to time, never more or less along with a brief note about how it was going. She had all the end stage cirrhosis problems but was always positive. I spoke to her only one time when she called to say she was moving to hospice. She said she was at peace and not to worry about her. She instructed me to keep helping people. That was all until the note about her passing.
Art has the power to move people. As I write this I'm reminded of a couple of things that have affected me. I'd like to share them with you. The first is the KIPLING poem "IF".
The stanza I like best is this one
If you can dream—and not make dreams your master;
If you can think—and not make thoughts your aim;
If you can meet with Triumph and Disaster
And treat those two impostors just the same;
If you can bear to hear the truth you’ve spoken
Twisted by knaves to make a trap for fools,
Or watch the things you gave your life to, broken,
And stoop and build ’em up with worn-out tools:
The other is a song THE IMPOSSIBLE DREAM click the link to listen.
youtube.com/watch?t=24&v=OH...
I've looked death in the eye twice in my recent journey. The first when I was diagnosed with NASH Cirrhosis. I knew cirrhosis was end stage and that shook me a bit. My image of the angel of death was the usual one of the destroyer reaping the world. I decided that wasn't for me just then and embarked on a very rigorous program to reclaim my liver. That effort was quite successful. My docs are confident that I will die from something else.
The second was last year when cancer in the form of multiple myeloma nearly put me down. My wife worked hard to be encouraging but was preparing herself for my death.
The crisis phase of life's journey is often pain filled with the indignities of becoming a damaged thing that the hospital is trying to save. They try to be kind but so many procedures carry pain as part of the deal and your body is doing unkind things that are vexing. In that time of discontent thoughts of the angel of death easily surface.
I learned that my vison of that creature had changed. When constant pain is the focus of life, death can be a kindly grandmother who tucks you in. I was delirious for several days and during my time in that internal room I imagined talking with death's angel. I decided this wasn't the time and sent her on her way. She had changed from an avenging male to a kind women in my mind. Strange musings of a mad man I suppose but I felt at the time that it was my choice and I elected to stick around. I soon rallied and here I am now with my cancer in remission and only a few residual problems. I wonder sometimes how much was real and what was just injury and drug induced psychosis but it only matters that I made a decision to stay in the game.
Bonita was a powerful influencer with her small gifts but all of us as patients can and should seek to help our community of shared illness. It is a common struggle best not fought alone. You may not feel well but reach out to those around you. You may find the 3 dollar giver that can change your life or realize that you are a 3 dollar blessing to someone else.
If you haven't joined our survey on the care patients are receiving already, I invite you to consider helping us. We seek to document how patients are being served by their docs in this important time of change for our patient community.
The State of Steatotic (Fatty) Liver Care in America is an annual survey of liver patients seeking to understand what their experience with doctors treating the disease has been. We need your input to help us advise doctors where we, the patients, feel the care given needs to improve. Please click the link below to go to the survey. It is completely anonymous.
What you should expect, it will take about 20 minutes and there are 50 questions. LABORIOUS, I know. I hate surveys myself but this is to help us, the patient community, not some company, so please give it your attention.
CLICK THIS LINK TO GO TO THE SURVEY
If you prefer, this is a link to Spanish Verson
If you would like to read the 2023 report the link below will take you to that one.
STATE OF NAFLD/NASH CARE 2023
Stoping NASH/ Fatty Liver before Cirrhosis.
