Our Son Is Well: a Journey From CFS/ME to Living Fully

Our son is well.  He’s been well for over a year.  It is SO WONDERFUL to have him back!  When he was 11, he got sick after having an oral surgery to remove several teeth to get ready for braces.  I’d been worried that he would miss the Valentine’s Day party in his 5th grade classroom. His surgery was Feb. 12th.  It turned out he missed a lot more than the party.

A day or so after the surgery, his stomach started hurting.  We thought it might be the pain medicine.  Even after he was off the pain medicine, his stomach hurt, and it seemed to be getting worse.  He started getting strange little spells when he’d feel terrible, get a low fever, have severe brain fog, and abdominal pain.  Within a month we had a diagnosis for Celiac Disease.  Celiac is an autoimmune disorder.  The body attacks itself when exposed to gluten.  We thought we had our answer and made our home gluten-free.  The abdominal pain subsided, but the spells continued and got worse.  He missed a lot of school.  We talked to a lot of doctors. The day he was supposed to be at his 5th grade promotion and celebrating the last day of elementary school with friends, he was sick at home, and I was meeting with a prospective naturopath.

We didn’t end up seeing that naturopath.  She scared me.  We found a different naturopath an hour and a half drive away that was helpful.  We found an acupuncturist in our town that was also helpful and very knowledgeable about living gluten-free.  We were at the doctor’s office all the time and did so many tests. Lots of blood draws.  Still, no answers or relief, and things were getting worse.  Two weeks before he was supposed to be starting middle school, we were at a low point.  We were on vacation at the beach.  He was curled up sick in bed, low fever, intense brain fog, sinuses clogged, and just miserable for days.  His brother wanted to know what was wrong, but we didn’t know. How in the world was he going to start a brand-new school?

The naturopath said to stop eating soy.  The pediatrician said stop taking his temperature.  We had a meeting with the school to set up a 504 plan.  We thought leaving soy out of his diet helped.  I was reading about autoimmune diseases starting to understand that there were no autoimmune doctors for us.

He started middle school.  It was a struggle.   He tried so hard.  He’d be sick and miss school.  Then he’d get behind in his schoolwork.  Then he’d be well enough to go back to school and try to catch up on what he’d missed.  Then he’d get sick again.  All his energy and all his effort went into trying to stay caught up in his classes.  We continued with the naturopath, the acupuncturist, and tried cutting out different foods. Eventually we noticed a pattern.  When he did more, he would pay a price. We later learned this is called post exertional malaise. He budgeted his energy.  No sports, no piano practice, very little time with friends outside of school.  He missed holidays and birthdays.  I will be forever grateful to his buddy who rescheduled his birthday party for the next week when our son wasn’t up for it that week.

Middle school passed that way.   After two years, I suggested we go to the Mayo Clinic, but our doctor didn’t think it would be helpful.  The third year, he stopped gaining weight and it was time.  At the Mayo Clinic, he was diagnosed with Chronic Fatigue Syndrome (CFS/ME).  There was not a lot they could offer in way of treatment.  They said go to bed at the same time each night, eat well, stay active, continue with school-type activities in summer.  They gave us some pamphlets and we had a helpful follow-up phone visit with a nurse.  We had limited his diet in effort to help him get better.  Now everything was back on the menu except gluten.  That was helpful.  He gained 7 pounds quickly on whole milk and Lucky Charms.  They are magically delicious.  He absolutely hated taking the class in summertime but did it because the doctor said to, and his parents made him.

He started high school.  He worked hard.  It was all he could do to stay caught up in his classes.  By the end of the first year, we cut out one of his classes.   We had done our best with the advice from the Mayo Clinic.  It had made some improvements but was not enough.  We started looking for possible treatments.  I asked our doctor about one treatment I’d read about online.  He was not in favor of it.  I read about another treatment that was approved in other countries but was still in trials in the US.  Both treatments had reported some scary side-effects.  I didn’t want to make anything worse but didn’t want things to remain the same.

Then we heard about the website Recovery Norway and the Lightning Process.  The stories on Recovery Norway were about people who had recovered from CFS/ME.  Many of them mentioned the Lightning Process.  It was a training, not a treatment.  What did that mean?  The stories were incredible.  Miraculous.  They talked about recovery.  Why not call it a cure?  Did it matter?  There was story after story of people getting their lives back, their loved ones back.  No scary drugs.  We talked it over, and he signed up.  It seemed like a no-brainer to try this before the other treatments.

We found Amanda Ashley, a Lightning Process Practitioner.  She is AMAZING.  She talked with us to make sure he’d be a good candidate for the process.  She prepared us.  There was an application process and some materials to review before we started.  It took extra effort for him to fill out the application, but he did it. After talking with our son and both parents, she agreed to take him on. We were so relieved.  He would do a 3-day session online with Amanda and another client.  She prepared him in advance and made sure he would be comfortable with the other person.  When the time came for his three days with Amanda, he was ready.  He was 15 years old by then and didn’t want to have his parents or brother in the room.  He disappeared with his computer for the session on the first morning.  At lunch time, he came out and made himself a tuna sandwich.  It wasn’t a big deal, but it kind of was.  He hadn’t done that before.  Something was different.

That was one year and 3 ½ months ago.  He is 16 years old now and a junior in high school.  He’s got his driver’s license and is very interested in cars.  He worked nearly full-time last summer at a local auto shop learning to repair cars.  He’d come home greasy and happy after a full day of work. The heat in the shop on hot days didn’t bother him anymore than it bothered anyone else. Now that school has started, he is taking a full class load and working at the shop on Saturdays.  He goes to high school football games and out with friends.  He is living fully, looking forward to his future, and enjoying the present.

In addition to the three-day session, Amanda also had check-in meetings with our son.  They’d be spaced a few months apart and often near a transition time like the start of the school year.  I’ll never know what they talked about because he didn’t want to share that.  Every time, he emerged from those phone calls refreshed.  He had wind in his sails, and all was well with the world.  She has that effect.

She also helped me to trust that the progress he has made will stay.  After years of trying so many different things with disappointing results, I worried that this wasn’t going to work, or the problem was going to come back.  She put me at ease.  When I thought I saw a problem might be returning, she helped me see it was not that problem that I’d feared, but just a teenager being a teenager.

I think it is also worth mentioning that this change in our son has continued through some difficult times.  In addition to a pandemic, his parents have split, his Grandpa passed away, and he’s moved.  That could knock a person back, but it hasn’t.  His recovery has continued, and he just keeps getting better and stronger.  He is doing the things he wants to do.  He’s got his life back.  The Lightning Process has made the difference and I am so very grateful.