I think one of the most difficult things about managing a chronic disease in the course of my lifetime for my children with and without TSC, and various other family members, is being continually called to be real and face reality in a world of chaos and confusion that often accompanies a TSC diagnosis. For years, all it seemed I wanted to do was run. Escape. What I mean by being real is merely the ability to be there in the experience with whichever kid or person is going thru some suffering and really let myself feel it. Feel all the fear and chaos, feel the weight of sadness for this being that you’ve helped accompany into this mad mad world, when you have half gone mad yourself and are holding on, kicking and screaming, daily, to your sanity. And letting sanity go on occasion. It’s hard to face it. To accept it, the diagnoses and manifestations, over and over, and all the fear and complicating emotion and feelings that go with it, let alone manage it. It’s a shit storm that I had to survive. I signed up for it, I knew I could do it, but that was the long game I couldn’t see I was playing at the time because I was trying so hard to just keep my kids and myself alive.
I will admit, surviving meant a dip into the realm of moral apathy that the uncertainty and unrelenting life-threatening nature of TSC can trigger. Seizures in TSC, particularly when a child is growing and developing, can run rampant and wreak much havoc on a child’s development and ability to learn and develop. Getting control of seizures is tenuous until the right combination of medications or other treatments finally provides relief. For some, this never completely happens. The horrifying, and life-threatening experience of witnessing status epilepticus in one’s child will forever haunt and hang like a dark cloud over every single aspect of the existence of those involved until seizure control is gained. It’s PTSD, IMO, and can leave permanent scars on the psyche of all involved, from affected child, parent, grandparent, friends, and neighbors witnessing as well. It sent me down a dark path that I’m still making sense of to this very day.
When I was personally moving from surviving to some level of awareness and recovery, I had to cut myself off from almost everyone I had grown to know and love during a very chaotic period of my personal life, in an effort to heal and rebuild the shambles of what was almost an apocalyptic experience. Part of the 12 step recovery group with which I’d aligned myself at the time, has this tenet about changing playmates, playgrounds, and playthings after coming into the halls. While this is great advice, especially in the road kill phase of recovery, when you’re still raw and quivering with fear of any kind of sober life, it’s best to keep good boundaries with those people places and things that might lead you to believe that it’s ok to venture back. But this is almost a misnomer. I understand the intent, it is pure and helpful in its simplicity, but like a lot of the 12 step literature, “it’s simplicity” can be a downfall. Not for many, but for some, and unfortunately, or fortunately, depending on how you see it, for me.
So there I was, it was about 2005-2006. I was almost 40 years old, mother of 5 children, divorced once, let go of custody of my firstborn, remarried and had 4 more children with my ex. Nuts. Surviving. My youngest child was just cresting two, and then it went agewise; 5, 7 and 9 or something like that. with my oldest son that I missed dearly, dropping in and out of my life, as I could wager the energy to face. I was isolated, exhausted, lonely, and seeking. I’d been trudging through the trenches with the kids and trying to care for them and help my ex start his solo practitioner legal practice, wrangling all the medical care and emergencies and school issues and shopping, cooking cleaning?…. I had little time for friends. My father had passed away in 2004 after a quick and horrific decline brought on by frontotemporal dementia. I was drinking moderately, taking my psych meds, trying to run and stay afloat. But part of me was wailing, screaming, crying on the inside at all the many injustices and concerns I had for my kids, my relationship with their father and for my own self deep within. I kept having to bury it. I am not good and lying and hiding. Just ask my ex who almost always found my empty booze bottles and various other paraphernalia I fiendishly hid during those years of mounting desperation, compartmentalization.
Mostly, as I forgive myself repeatedly for my actions during that time, I am reminded of the nature of TSC and TAND (TSC Associated Neuropsychiatric Disorders) Shit. I married TAND. We had no idea, nor did anyone else, how much our misunderstanding and lack of communication about managing TAND AND TSC in the kids in the parents, in the grandparents, fueled the mounting addiction problems, anger issues and all the other ancillary crises that come along with not being able to adequately express the feeling of “I need help and have no idea how to manage my life with these kids and it has become too much”. Escape, denial, etc ran rampant, but as with everything we experience in life, it was not all dark and an attempt to paint it so would be to create an inner disconnect with which I cannot live. I think if we’re not careful in the management of TSC, we all get a degree of TAND whether we have TSC or not, just from the weight of daily reality dealing with these TAND behaviors.
I was called to remember that there were also some good times, some good things and some interesting, exceptional people, that I had cold clean ditched on my way to trying to cage myself in and rewrite my own history in such a manner as I would effortlessly float through all emotional and other baggage on my path to happy destiny. Bullshit. Nothing is ever simple for me. I continue to “recover” which has come to mean simply (though it’s never simple) trying to do better, pointing the compass a few degrees closer to true north and moving forward. A day at a time. So much I did learn from the many wonderful souls I met in the halls, but I just couldn’t hang out there forever and visiting is confusing right now.
I had set an internal intention that I would find a way to reconnect with someone from across the street in our old neighborhood. We certainly partied a lot then, but also, we bartered with each other for daycare, barn building, swam in their pool, ate each other’s food, went on vacations together, spent many an evening drinking and laughing, planned parties together, and basically had each other’s backs. I ended up watching one of the neighbor’s kids, Abby before school so my neighborhood friend and her husband could get to work. What was it to me anyway? Their kid was a loving handful, but also she played with my kids and I was home anyway, so it seemed like not a biggie and it wasn’t. Except I was forced to care for someone outside of my family in a deep way that I wasn’t completely aware of at the time. I was keeping the window of “real” slightly open.
Abby and I connected a bit on FB, and she started listening to my podcast and like the outgoing Abby I used to know, suggested she might be an excellent guest. I have an inkling she’s going to be right. She’s coming over soon to do this podcast episode in person and talk to me about her experience of TSC in the lives of my children during that very chaotic, but very important time period in our lives. I find myself quite excited but also a bit anxious as she is the first person from what I thought was my abandoned past, to cross the bridge herself and take the risk of reconnecting after the passing of time and all the changes pertaining to our mutual paths.
So, I hope the podcast is awesome but more than that, I am grateful for her being real, taking a risk, being willing to walk back into our lives and declare her ongoing love and concern for our family, despite all the chaos and drama that occurred in the wake of living and learning and understanding the weight and consequence of living with and managing a chronic disease such as TSC. Welcome back, Abigail Picard. I can’t wait to hear from you!