October 28, 2022. At Burgos, Spain.

Dear Christine. A few days ago I told you I had decided. You ask how, and why while I was walking across Portugal and Spain. Your question took me by surprise and I’m not satisfied with the quick answer that I gave. The question has occupied my thoughts these last few days because we both deserve a thoughtful reply.

“It” has haunted and stalked me since grade school. Until playmates begin pointing it out, I gave it no mind, I was being like my mother. My dad said we both just worried too much.

In high school I was too young to legally drink alcohol, but that didn’t stop me. Friends found it curious that after a beer or two “it” temporarily disappeared. I since learned that this is a common trait.

Aptitude tests in college and my own interests pointed me in the direction of a career in medicine, but that was certainly out of the question. Instead I became a lawyer.

It was always able to adapt. Two hands to put a key in a lock, tall beverage glasses half full or lids on coffee cups, instead of hammers and nails it was cordless drills and screws. A really good legal assistant and voice-to-text typing proved invaluable.

“It” didn’t stop me from bicycling across the United States when I was 58, or hiking with you across Spain when I was 61 and then across Portugal when I was 66. It didn’t stop me from sailing, traveling, or pursuing the things that have enriched our lives with our children and grandchildren.

This last month has been different. I am again hiking Portugal and Spain, but this time without you. “It” has become progressively worse the last few years, but the assistance that you give me each day has quietly taken up the slack in a way that I had not fully appreciated.

In your absence I see my limitations every time I look at a menu. Where I sit in a restaurant matters, as does the question of table service versus self service. Completing information forms at the airport or hotel necessitates humility on my part and assistance from others. While I am beyond being embarrassed, I am not beyond confronting reality and the future.

I hinted at this in my earlier essay, “Alone and Invisible“:

“…I also read from the script of the the possible future. We have shared over 48 years together, 45 of them as husband and wife. It is exceedingly rare that spouses draw their last breaths together. More common is the outcome visioned in the vows which begin the journey of marriage, “…until death do we part.” It was thus with my mother living alone for 11 years after dad died, and the same for your dad living 9 years without your mom. It is likely that one of us will have to embrace “alone” as a way of life.”

My mantra has always been, “Don’t put off until tomorrow the things you may then find you are unable to do.“ At 70 years old I am mindful that circumstances could arise at any time to deprive me of this decision.

So, assuming the neurologists and neurosurgeons still agree, I have decided to undergo bilateral Deep Brain Stimulation surgery (“DBS”) to treat my Essential Tremors. I have chosen this over the newer Focused Ultrasound therapy (“FUS”) because it is reversible, and can be done bilaterally. While both treatments report over 90% rates of patient satisfaction and safety, DBS has a proven track record of long term efficacy. I have weighed these factors against the usual risks of surgery and my understandable aversion to having holes drilled in my skull and implants placed in the center of my brain.

All that having been said, you are still a part of this decision and I invite your thoughts when we rejoin each other next week in Barcelona.

Love, Peter.

PS. Those of you other than my wife may wonder why I am being so public about this. It is because this condition has been “public“ my entire life. It is not something I have ever been able to hide. ET is the most prevalent neurological motion disorder in the world. ET directly affects the lives of nearly 1 and 50 people. It also impacts the lives of loved ones like my wife. Fortunately, for most it is merely annoying. Unfortunately, for many like me it becomes progressive in later years and significantly impacts the quality of life.

If you would like to learn more about Essential Tremors this link will provide a good start to your inquiry: National Institute of Neurological Disorders

36 thoughts on “The Decision

  1. Thanks for being so open about this. I look forward to learning more about it. I began having seizures when I began to enter menopause (many years ago). I stopped having them once I had a total hysterectomy. Funny how not one of my doctors would listen to me when I suggested they could be hormonal. I’m still on medication, but thankfully haven’t had a seizure in 17 years. Good luck with your procedure.

  2. Rhondda Sweetman says:

    I’m going into hospital on Tuesday and having the operation on Thursday. I cried when I read it. I wanted to study medicine but opted for a Science degree instead.

  3. My husband (71) has Benign Essential Tremors that are getting worse. Im going to have him look into this. He can hardly write clearly, spills his coffee (and more importantly his wine… we call it it aerating the wine in his glass), can’t hit the right buttons on his cell, (you know what I’m talking about), etc. Thank you for sharing this info! Blessings!

    • Hi Annie. The first step is to find a qualified neurologist and/or motion disorder specialist. There are medicines that can help, they just weren’t appropriate for me. Best wishes to both of you!

  4. Good luck with your decision. My daughter has had seizures since she was a freshman but now on the right medication to control them. Get a good specialist.

  5. Thank you for sharing ur journey. I too am unsure about dbs and whilst i am ‘ok’ i am no longer able to do the things i luv to do. I am going to read all of this over and over again until i am mote comfortable about where to go with this in the future.

  6. Oh phooey … I just wrote this wonderful post – and POOF – it is gone!! Though not fully caffeinated I will make a second attempt. I had picked up on your decision and wondered what it might be but did not want to ask. I figured you would let us know when you were good and ready!! My simple brain thought perhaps you were going to stride into Barcelona ahead of schedule, meet your bride as she sat at a table eating dinner alone (cue the music) and you would surprise her with your presence!! However your decision was so much bigger and deeper than anything my lil monkey brain could fathom. Thank you for sharing all of this with us, you pave the way for others to have similar conversations (should they choose) and you shine a light to give others the chance to learn about, or feel more comfortable – knowing they are not alone. We have a friend Nick who always says – “the decision will make itself”. Well my friend that is the best re-creation I can do one half a cup of cold coffee. Cheers

  7. Carolyn Clemons says:

    Your article really hit home as Jim as ET also. The doctor keeps saying it isn’t bad and upped one of his meds. I have seen it progress and him become way more easily frustrated doing tasks that involve fine motor in any way. Much admiration for you and Chris for being so open and sharing the journey.

    • Hi Carolyn, and Jim. It amazes me how many public and private acknowledgments I am receiving from folks who also have this condition. Fortunately, for most people it’s merely annoying. It sounds like Jim is beyond the annoying stage. My thoughts are with both of you. Pete

  8. Pete
    I am excited for you. DBS is a big decision, but the success rate is very high, and when it works it is life changing.

    I can’t wait to hear more about it when you get back.

    Tom

  9. Thanks for being so open and sharing. I’m sure this has been a difficult decision but sounds like a good one since it is progressing. You want to be able to continue to enjoy your life and family with all you can. You are and will continue to be an inspiration to others as many follow your story. You will continue to be in my prayers.

  10. Congratulations on making a tough decicison to improve your, and Chris’, life. There is so much more to live why not do it at your best.

  11. I thank God for the amazing Medical Science available in our world today. I never wish for the good ole days, knowing all the miraculous things performed by talented surgeons. One thing I know about Pete Schloss, you do your homework. I am sure you selected the right team to get the job done!
    Your sharing this has already helped others and that is who you are! Always guiding and helping others! You are are a very special man, Pete.
    May God Bless and keep you. You will be in my Prayers.

  12. What a decision! I know both of you will research every bit of this step. I’m so glad you have access here to some of the best medical specialists in the country. You have such a huge smile, I don’t know how much bigger it can get; but I know this step will fill it out even more. Prayers for an excellent result. Let me know if there is some way I can help. You know where I live. Love to you and Chris.

  13. Hi Peter…I’ve been following your travels, first time to comment. Big decision, good luck with it. I’ve had ET since age 19-am 55 now and have been struggling with the same decision myself (re DBS), my wife of 35 yrs is fully supportive of it and wants me to do it but somehow the argument in my head against has always been that it felt “selfish” of me to elect to put myself on the table instead of enduring it. We’ve…or rather I’ve – worked that out now and decided to proceed sometime next year. Thanks for sharing your thoughts, if you’re anything like me you’ve been mulling it over for quite awhile now. It’s a huge decision. Love the stories, safe travels. Mike

    • Hi Mike. I am always so pleased and honored to “meet“ somebody who has been following along. That is doubly the case in the context of this post. I have struggled with this decision and thought long and hard upon it. It took this trip to push me over the edge. Having made the decision I cannot express how much relief I feel.

  14. Pete, I know this issue has been with you a long time. It is good to hear comments from others who have or had similar issues and how they have handled it. Also, glad that you have scheduled a neurologist to discuss your options and hopefully come up with plan. Wish you and Chris the best.

  15. Well Pete, I wonder how many people know that it must be a real struggle to walk the path all day, then pick up the camera, download the photos, check them them all out, choose the very best and then write all those thoughts with unforgiving fingers and hand every .. . every .. . and every night in some kind of mental stupor to share your thoughts and insight into your and your families lives. Extra (ya, 2 words) extraordinary is you. I’ll say it again, or rePete you: Be well my friend.
    So says this atheist,
    Another Steve

  16. I wish you well. I made the same decision in May and feel I have been given a new life.
    Continue to let us know your progress. Thank you for sharing.

  17. You, Sir, are an inspiration! Good luck with this new journey. I had unilateral DBS 2 weeks ago, so I am still a work in progress! IPG is in and adjustments scheduled for mid November. Yes, we do find ourselves compensating for this “annoying” disorder. We find ways to cope. God bless you and your lovely wife. ~Rina

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