Taking Stock


There I was, indulging in a favorite pastime, ducking down rabbit holes looking for presents and learning about all manner of issues. Not surprisingly, I was stuck on chronic illnesses. I landed on a website Dr. Google shoved in my face. The site is devoted to the daily struggles of living with chronic conditions. The site’s title, But You Look so Good, was sarcastically scrawled in a messy hand across the top of the page. I just smiled. I understood how preposterous that phrase becomes when it is offered to me, not to mention thousands of others.   For us, that sentiment is all too familiar, its meaning clear: really, you cannot look that good and be so sick. Want to bet?


People are uncomfortable with illness, though chronic illness is in our national photograph. We only want to see the family farmer, the train steaming across the heartland, the baseball slugger bringing thousands to their feet in that snapshot. That is us at our best, the idealized America.   But look there, up in the corner. See the figure in the hospital bed. That person is a part of the American portrait, too. He is a patient and does not know what is wrong with him, and he is scared. Maybe she is a suffering soul.


The holiday season strikes me as an appropriate time to take stock of our lives and think hard about our futures. The NIH invests nearly $32.3* billion annually in medical research for the American people.   That figure does not seem to grow. Trump keeps attempting to cut the NIH budget. He has not gotten away with that, at least so far.   Military spending is projected to account for 54 percent of all federal discretionary spending, a total of $598.5 billion. Am I missing something?


I realize I keep beating this drum. I apologize, though I don’t. It makes me crazy.





7 Responses to Taking Stock

  1. Christopher December 20, 2017 at 11:19 pm #

    “Every great and deep difficulty bears in itself it’s own solution. It forces us to change our thinking in order to find it.” ― Niels Bohr

    We are taught from a young age that disease is bad, and avoidable. The truth is an obfuscation of both qualities.

    We are made to fear terrorism, terrorists, and the somewhat vague denizens who are ever trying to breach and topple our hegemony. The truth is somewhat more complicated and nuanced.

    We all don’t fear life altering diseases because we falsely believe that it is the exception and opposite to a life well lived. Yet the science proves that disease is actually intrinsic to our continual evolution and only an unknown factor of dice rolls away from any of us, at any time regardless. The fear of war and terror attacks is stronger and more pervasive as they are not as abstract and mistakenly thought of as easier to control and eradicate–all we have to do is root out all the bad actors. Yet the experts tell us it would be easier to cure cancer than to root out all evil, and moreso difficult by stockpiling weapons which only provokes more violence.

    If we could change the thinking of more people we might very well change the way we spend our finances on our future.

    But then again… what do I know.

  2. Jane December 21, 2017 at 8:04 am #

    Beautifully said, Richard and Christopher.

  3. Jasmin December 21, 2017 at 1:48 pm #

    Richard and Christopher, how about co-authoring a book 🙂

  4. Christopher December 21, 2017 at 3:25 pm #

    I’m only a writer in my head. What I write here is only one perspective on other peoples’ words and work. All of you have the energy and the capacity to get a message of change out to a wider world. You are the ad hoc social engineers who will influence disruptive cultural innovation–I’ve seen it in you all already, just by how you’ve changed each other here. While replying right now I’m noticing my nystagmus is getting noticeably worse, among other things. We definitely need big changes/advances sooner rather than later.

    Thank you though, you’re incredibly kind.

    Happy Holidays everyone! I hope that 2018 is a much better year for strengthening hope, and for assuaging disability and pain, for everyone.

  5. Jan December 29, 2017 at 7:33 pm #

    Nice way to end the year: insurance approved my SmartScoot. It took 3 months, 34 phone calls logged, and resiliency.

    Takeaways: start with the online portal upload, not a fax (even though three said to fax—sent my 26 pages of 12.5 years of brief monthly health updates). Very nice people throughout, but be your own advocate and do not accept what you do not want. Push up to supervisor. Their medical director approved, and at my request of in-network met deductible and better payment percentage split. Rationale of wanting device I can manage myself and with my current car.

    Resiliency, but MS requires more.

  6. Christopher December 30, 2017 at 1:29 am #

    That’s great, Jan! Really good news.

    Also, in case anyone isn’t aware, some insurance plans allow for processing out-of-network DMEs (durable medical equipment) as in-network claims if there isn’t any comparable in-network providers in your area… you just have to ask.

    Resiliency… yes, very important. I think we with MS get a crash course in crisis adaptation, not so much unlike soldiers dropped in a war.

  7. Jan December 30, 2017 at 7:15 pm #

    Yes; thank you, Christopher. And I agree: ask, and persevere.

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