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“The Haves And The Have Nots” Chapter 172
- 2 days ago
- 2 min read
I’ve never been considered one of the “Haves." As a matter of fact, I've done alright for myself as a “Have Not." I don’t have millions, but I am blessed to have enough. I don’t have a mansion, but I do have a modest house. Never have I considered myself in the "Have" category, at least not by American standards.
However, all PALS are “Haves."
We all:
Have ALS
Have a death sentence
Require help from others
Have dreams of a cure. No, not some medicine that will “extend” our lives 3 more months. We need a cure!
Have to have equipment to keep us alive
Have medicine and food
However, not all "Haves" are the same. As I meet more and more PALS, I realize there is a big hole that could be killing the "Haves" and making making me realize they could actually be "Have Nots."
The average annual medical cost for ALS (Amyotrophic Lateral Sclerosis) ranges from $31,000 to over $120,000 a year, depending heavily on the disease stage. Lifetime costs can exceed $1.4 million. Out-of-pocket costs average $80,000 to $250,000 annually when factoring in specialized equipment, caregiving, and home modifications. Some of my equipment includes a power wheelchair and ramps, ventilators, suction machines, oxygen tanks, a converter, and even the technology system I use to write this blog.
This estimate doesn't even include a mobility vehicle (50-100k), home generator (5-25k), or home remodeling (25-150k). All that money for an average 2-5 years life span after diagnosis. BTW I am on year 5.
Yea... PALS automatically qualify for Social Security and Medicaid, but that doesn’t cover everything and, in my opinion, the financial burden is killing the “Have Nots" faster than the actual disease. Imagine being told you have 2-5 years to live. There is no cure and you are going to spend a lot of money just to live. If you’re a civilian, that is exactly what you will face. Even if you are a "Have" by American standards, you are now a "Have Not."
On the other hand, if you served your country and were a "Have Not" before diagnosis, congratulations! For the next 2-5 years you get to be a "Have." Your 100% military disability will pay for everything, taking the financial burden off your back . This alone can give you peace knowing you won’t be a financial burden on your family .
I am proud of my 21 years of military service and blessed to be a "Have," but it pisses me off that so many great people have no other options except to fall in the "Have Not" category.
The next time you come across someone’s fundraiser page asking for donations, SMASH that support button and help a "Have Not" become a HAVE.
Love and Blessings
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I consider you a "Have" .... you have been an inspiration to myself and countless others ... you have fought and lived admirably regardless or the diagnosis or progression ... you have been an amazing advocate to find a cure ... you have the will to go on 5 more years ... God Bless!
You have such a loving heart. You've always cared and advocated for others. That hasn't changed. ❤️🌻
Greetings and Salutations, David,
Hey, David, my name's David, too!
I was born David, but when I was adopted, my name was changed to John.
Do you pronounce your surname the way it is pronounced in Utah, or the way it's pronounced in Wyoming?
When I got your e-mail and saw that color photograph of your azaleas, my first thought was that I was fixing to read an announcement of your passing!
What else would anyone think when seeing all those colorful flowers?
I'm sure glad you're still with us!
Now that I'm an octogenarian in a wheelchair and living in a State Veterans Home, I've recently been Medically Retired by our United States Army.
At Your Service,
John Robert…
My husband is fortunate to be one of the "Haves", if you can call being a veteran in the last stages of ALS "Having" something special. Yes, we have all the equipment and medical supplies we could ever want (and ever asked for), but what we "Have" is a future slowly winding down, with accelerating skin breakdown, increasing periods of coma-like sleep, a dresser full of clothes he will never wear, a $99k wheelchair van he'll never ride in again, a $60k power wheelchair he'll never sit in again, a prepaid cremation, a DNR order, and a very responsive hospice organization. I am slowly donating small things - clothing and medical supplies he'll never use again are going first. Then…