Click 2012 ( over there -> ) and start at the bottom if you want the story from the beginning.

Sunday, November 4, 2012

No offense intended.

I don't mean to offend anyone, but please allow me to share something personal with you.

But first - I'm doing really well, life is still good, we're taking each day one at a time, with an understanding that each day is a small slice of eternity.  We are learning and benefiting from our experiences.  AND, as of this moment we have 78 days until we head to Maui.  It is what it is, and it's all good.  Now . . . . down to business.

This ALS is a terminal illness - no cure.  The most likely prognosis is that it will kill me sometime in the next 2 to 5 years. There is one medication that my doctor has prescribed that has a very modest potential to extend my life 3-6 months. (I know - big WOW, huh?)  Fortunately, I still work at the University of Utah where I have really good health insurance.  Even with my great insurance, the medicine costs $1600 per month.  I'm really lucky that there is only one medicine for ALS because this is a drop in the bucket compared to what a lot of people are paying for meds. I don't know when my last day at work will be, but at some point, I will be paying COBRA premiums for my insurance to keep the cost of this medication down and to cover the other medical costs associated with this disease.  I will be eligible for Medicare in 3 years.  The social security administration could give me disability, in which case medicare would kick in in 2 years instead of 3.  Either way, I probably won't get all my FICA payments back - and this is not a complaint about taxes.

I have a daughter who, after she became a single mom, did not have health insurance. She had to put off dentist and doctor visits until she found a job at a company that provided access to health insurance. Her son was covered through his dad's insurance, so my daugher would take her son to the doctor, but she felt that she couldn't afford to go.  We are the only modern, western industrialized nation where people have to make choices like this.

I have always been very healthy.  Except for ALS, my health is still better than an average person my age.  In one day, my wife's and kid's lives, and my life changed course in a way that we never imagined. This could happen to any of you and probably will.  Anyone in your family could get so sick that dealing with the illness could take your entire life savings, and more, including life itself.  You could get cancer, heart disease, a stroke, have a serious accidental injury, or any one of a number of afflictions that could change your life forever.  Something will take you out, sooner or later.

I admit that I was supportive of the Affordable Care Act (Obamacare) even before I got sick - in fact, I thought it didn't go far enough.  Some people would label me a "socialist" for feeling that way.  I hate labels, don't you?  Maybe you have good insurance, good health, and love your doctor, so you are thinking that your situation is secure and that this is someone else's problem.  I encourage you to think again and be open to the possiblity that next week, you or a loved one could be permanently disabled, or diagnosed with a life threatening or terminal illness.  If you lose your job, and are taking something as common as blood pressure medication, you could find that you are uninsurable. 

I don't pretend to know what the right solution is, but I'm sure that good people working cooperatively can find a good solution if they only will.  I do know that I am extremely glad the election is over on Tuesday.  Whoever you are voting for, please think about this and let your elected leaders know that they must stop playing politics with this, whatever party they belong to.  Being against something, just because the other guy is for it, is the worst possible excuse for not getting this and other problems solved.

After Tuesday, some people will likely be more pleased than others, but one thing is certain - the sun will rise on Wednesday morning and life will go on.  But, aren't you sick of all this silly political bickering and demonizing?  Why don't we stop putting up with it and let our leaders know that it is unacceptable!

By the way, for those of you out there who are very lonely, here is a recommendation.  Next election, donate some money to a presidential candidate and you will have more new friends than you ever wanted.  You will need a bigger email inbox and you might need better medical insurance to cover the broken finger you are going to get punching the delete key on your computer.  And . . . the party invitations you will get . . . . I'm just saying.


  1. Cathy Bateson HoughNovember 4, 2012 at 3:32 PM

    I love what you've written and I totally agree. I, too, have been blessed with good health, but with the 'new' Century Link insurance, costs are outrageous.....and because of what I have to pay, I don't go as often as I should. I wish the politicians would get back to governing and I wish the money that is spent so needlessly on these campaigns would instead be put to better use; like a 'stronger', more comprehensive healthcare system. My thoughts and prayers are with you and your family.

  2. Dear Kevin,

    Cassandra told me about your blog, and I put aside everything else until I'd read it all and looked at all the videos, too. I love this latest post, but mostly it's just good to know what's going on with you. I have known other friends with ALS, and their journey was not easy. However, you seem to be embracing life with such enthusiasm that I am looking forward to seeing that bungie jump video!

    All my best to you and yours,

    Jo Yaffe

  3. Kevin you are so amazing. I really look up to you in all this that you are going through. I am lucky to have an uncle like you. I too am pretty disgusted with the political environment we're in. And even more so with our situation like what Kristen was going through. Our medical world is such a greedy, selfish place. SOMETHING has got to change. I don't know what the right solution is either. Who's to say "socialized medicine" would be bad or good. I know there are lots of countries that do it and it works very, very well. And just because a medicine can be that way doesn't mean everything else has to be "socialized". There are lots of areas in life where "capitalism" is a better policy. But I have doubts that medicine should be in that boat. I myself have had to declare bankruptcy because of doctor bills and such and I've always had insurance! Even those of us with insurance suffer a great deal from the greed. It's sad.

  4. Kevin,

    Jan connected me to your blog and I'm so glad she did. I've been thinking about you a lot in the last few months after learning of your diagnosis, but also because of your outlook. I thought of you specifically after I attended a local Integrated Health conference earlier this fall and was struck by some things taught there about stress, spirituality, other ways besides Western medicine to heal ourselves and stay whole, and a lot more. One of the speakers has spent his career researching resiliency. He says we can let life hit us so that we sort of crawl back to the same point, or in some cases, we don't ever really recover. Or, we can embrace life's bumps and rise above them so that we are stronger and more whole. In your case, I believe you have come to understand what we're all supposed to learn in this life, and you have become a whole person. May the universe watch over you and your family, Kevin. Thank you for your example.




Follow by Email