What Happened to Pastor Ron

For a brief time, I was Teaching Pastor as Liberty Towers Church in Sacramento, CA.  I really enjoyed my time there.  Pastor Terry, the staff and the people were so wonderful to me. Easter Sunday 2104 was my last Sunday to preach there and many people are wondering what happened.

The morning of March 24 was a very bad day for me.  Besides being a very painful disease, I have other Neurological symptoms such as seizures, double vision, hearing loss and dystonia.  When I awoke that morning I had seizures for about 2 hours and went to the hospital. 

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Dercum’s Disease (Adiposis Dolorosa) works in cycles.  During an “Up” cycle I feel better, have less pain, few neurological symptoms and can be more active.  These “Up” cycles last typically 8-12 weeks.  The “Down” cycles well.. you can imagine what they must be. Lot’s of pain, lots of weakness, seizures etc. and they last much longer, typically six to nine months.

Each time I enter a down cycle I come out of it weaker than before. The disease is literally consuming my body.  I have so many tumors we quit counting them. Yes, they cause pain but they interfere with many things in my body and there is nothing that anybody can do to stop the progress of this disease.

This disease is so poorly understood that the doctors really don’t know what the future holds for me. Perhaps the scariest part is the dreaded “D” word… Dementia. It is one of the symptoms of this disease but nobody knows for sure if or when it will happen to me. I always assumed that if dementia was happening to you that you wouldn’t know it but that is far from the truth. You are the one most acutely aware of what is happening to your body and your mind. Long before it shows up on any brain scan, you are the one who knows about the times when you were confused by simple things that were never confusing before. Have you ever experienced walking into a grocery store and then paused in the frozen food isle only to realize that you don’t know how a grocery store works? This sounds so bizarre it’s hard to believe but it happened to me. Of course, the effect was temporary.

My decline is slow and sure, like the sand on a beach being slowly washed away by the waves, sometimes better, sometimes worse. How long will this go on? No one can really say. According to the medical literature “The effect on mortality is unknown”.

In this most recent decline I have once again had to face the facts.

  • I can no longer live alone
  • I can no longer drive a car
  • I am unable to care for my teenage daughter
  • I am almost to the point where I will require nearly constant supervision

For me to live in Sacramento, I have to pay rent and hire someone to drive me around and assist me with things I need help doing. By moving to Fresno I can live with my mother and she can help take care of me. It helps me, and it helps her because I have disability income to provide for her. It is a win-win for my mother and I but at the same time very sad that I had to leave Sacramento and Liberty Towers Church which I loved.

The next time I get on a “Up” cycle, perhaps I can ride a train up to Sacramento for a visit.

 

6 comments

  1. Hi there Ron. I want to thank you for taking the time to write here and describe the symptoms of your disease so that all of us who are praying for you can have a good idea of what you are up against.

    I’m sure sorry that I wasn’t able to talk to you before you moved…but pretend that I did!! It is great that you’re with your Mom…she’s such a wonderful woman. I have LOTS of great memories of the times when our families ( including the Johnson’s, Pierces, Uncle Bud & Aunt Nita, and the Haile’s once they moved here) would get together and go out after Church on Sunday nights, and the many different times that we would get together for various holidays and also just for fun.

    I learned long ago by watching our parents as they have all remained great friends all these years that it is truly a blessing to cultivate your friendships, b/c when the hard times hit, including serious illness, having those people who truly care about you is critical. This has been incredibly true in my life as I have been fighting serious and progressive disease for 29 YEARS now. I know who truly cares about me even when I have a stretch of truly bad times from it….those girlfriends who didn’t run away.

    So Ron, I really want you to know that I will be praying for you…and am not afraid to be a friend, just b/c you are ill and are having a really tough time with your disease at this point.

    Thanks again for writing all you do to help us understand your situation and the need to move!!

  2. Love you and pray for you and miss you and your clarity.

    I have prayed over and over to God for your healing. But God doesn’t seem to grant that prayer as there must be something we don’t know in the infinite will of God.

    But I have seen the other miracles.

    The miracle so you could come back to Seattle area and live independently. To visit and share with us and to allow us to be with you. Even if only for a time.

    The miracle to help others and start a foundation. To share what with others to give them comfort and guidance.

    The miracle so you can be a teaching pastor and share your clarity to others. Teaching others even if online and states away. To hear you do formally by being a teaching pastor what you do so well in smaller settings and especially one on one.

    The miracle so you can blog, write books, and help us to see in the midst of the storm.

    The miracle so you an reach out to others with your words, thoughts, and teachings.

    I know it seems like no miracles have happened when you have seizures and pain. I even question this as this is not the prayer I asked for. It is too easy for me to say all of this when I am not feeling what you are feeling. Have I seen miracles?

    I write this so you know how much you have touched others and how much you are loved and missed.

  3. You are in my prayers every day, Pastor Ron, and you are an inspiration to me and to others of what it means to “fight the good fight” and to “rejoice in hope, be patient in tribulation, continue steadfastly in prayer.” May God bless you and continue to use you for His kingdom in Fresno.

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