I met Roberta close to a year ago. How we met was rather serendipitous, and an entire story in itself. I will talk about that in detail at some point in the future. For now, I want to stick with the critical elements.
Roberta is currently fighting to keep custody of her adult son, for whom she has “power of attorney”. Roberta has power of attorney for her son Jay, because his mental and physical health has completely deteriorated from neurological lyme disease. Jay’s story of infection, lack of diagnosis, and downward spiral is what we members of Our Lyme Nation understand without need for detailed explanation. We know it. We live it. We see it in other people that have no idea they are even infected. It is the “textbook” lyme story – on crack.
One of my dearest 30+ year friends, (and member of Our Lyme Nation)Terri Fevang introduced me to Roberta and Jay. Terry is a Certified Music Therapist and routinely plays music for terminally ill patients. Roberta heard about Terri’s program and hired her to play for Jay. Because Terri is one of the planet’s most beautiful people, she called me immediately and said “I need your help. Tell me what I need to do.” Terri is one of the few non-infected people that “gets it”. She knows enough about our misery to understand, this gig was going to be different.
We talked for an hour and it was amazing because talking to Terri is always amazing. We said our I love you(s) and she promised an update as we said good bye.
A few days later, I got the update. I immediately decided I had to meet Roberta and Jay and would join Terri at her next music therapy appointment with Jay. I am so glad I toughed out the solo journey, because it changed me. Again. I keep changing. But I digress.
Roberta’s picture should be in the dictionary next the the definition for “world’s nicest person”. This woman defines strength with grace in the face of adversity. The burden this woman carries along with her equally endearing spouse is monumental. Jay’s situation is just plain heart breaking. I asked Roberta if I could take video of Jay. I knew I would be seeing representatives of Senator Cory Booker. I wanted them to be able to see this 40 something year old man named Jay. Roberta agreed, and so I discretely set up my laptop, and walked away to sit and watch as the day unfolded.
It was a good day for Jay. He was up, showered and sitting at the kitchen table. He had dialog (in a way a three year old would have) with Roberta. They embraced and it was beyond moving. As Terri played and spoke to Jay – in the way you need to speak to Jay- she connected. He was present in the moment. He liked us being there. It was beautiful to see his good day. Roberta shared the moments that were living hell with me privately in an office with glass doors, where we could observe Jay at all times. I learned that Roberta’s daughter, now living back home with them, is also infected and struggling to deal with treatment. I also learned that Roberta’s husband Bob – had also been infected, but recovered well following treatment.
We talked about all the challenges this family faces everyday. I can feel the rage building up inside me as I think of their circumstances and lack of support from the medical community. If I allow myself to dwell on this for any length of time, it does actually become physically nauseating.
Roberta and I stayed in touch, and I showed two of Senator Booker’s aides, the video of Jay. I explained “This is what you can expect to see a lot more of in the coming years if we don’t get this epidemic under control.” I told them about my life. I explained that lyme suicide is a growing concern — especially as more and more of our children are being infected. The words helped, but Jay? Jay had an impact. He is an unforgettable visual of neurological lyme infection. We’ve earned support from Senator Booker and as a team we need to keep doing this. We need to keep pushing it out there. Sadly, that won’t do much to help the current day situation for Roberta, Jay and the rest of the family. I can’t imagine Roberta and Bob losing Jay. Yet, it may be inevitable because there “is no such thing as chronic lyme”.