honesty from the trenches….tuberous sclerosis complex …TSC, mental health, running, special needs, being here now. Rants, laments and lessons learned, from the annals of ebb & flow that is this lifetime
The following blog was written in 1993 by my new and good friend, Nina Patry. Nina hails from Rutland Vermont. Her claim to fame is that she is a certified Paradox Process instructor. We met last year while I was getting called up on a Lorie Ladd live event and not able to get my equipment to work to connect. Nina was cheering me on and we ended up chatting on FB and pretty soon we both realized we had connections to special needs individuals. Me, as a parent, and she as a sister and aunt. We’ve been friends ever since, in fact, to learn more about Nina, listen to the podcast I did with her. (link) During a recent conversation, we were discussing some of our experiences of the extraordinary abilities of our loved ones with special needs to be far more energetically tuned in than most ever imagine and what a gift, it was to have these “seers” in our lives. Then she read me the following bit of prose she’d written, which I immediately knew I had to share. I left the language as written. While harsh to read, it speaks somewhat to a bit of evolution of consciousness, that must continue in an accelerated manner related to all things we now define as “special needs”. Thanks, Nina for this precise and moving piece.
I went to Church this morning. First time in a long time. In Charlottesville, Virginia, where a large portion of our family has gathered for Thanksgiving. And I found myself particularly thankful for the special people in my life.
I sat in the front row, surrounded by my brother and my nieces – all “special needs” people. Christopher with Down Syndrome, thirty-two years young; Maggie and Emma are developmentally delayed, with no more specific label attached. Maggie and Emma are identical twins, eight and a half years young.
Retarded. Developmentally delayed. Rather judgmental terms—or at least markings at the low end along a linear evaluation of human beings. I prefer the Rudolf Steiner/Camp Hill movement view. That perspective places these people, at least on the spiritual plane, as beings more closely aligned with the unseen spiritual aspects of reality. They are seen as souls who have difficulty adapting to, accepting, relating to the advanced state of materialism much of our world reflects these days.
It is said in Camp Hill literature I have read, that these souls incarnate, but cannot enter fully into the mindsets, perceptions, and values currently dominant in “modern” or “postmodern” culture. Instead, these folk arrive, one foot in and one foot out. Here, but not here in the same way the rest of us are. And in that difference, their presence is a strong conduit, one which the spiritual plane needs to help bring our world back into balance.
These folk live their lives in many senses free of the pressures, drives, greed, and fears that many of us “normals” experience. They exist on more basic levels. And freedom from the materialist drives seems to leave them more time and energy for the truly important aspects of life. The unseen. Love joy emotions happiness. Freer to be themselves—they don’t understand so well our “civilized” codes—the dress code, the wariness and distance with “strangers” codes, codes on the “proper” ways to be in various situations.
I personally love to witness the ways in which this freedom reveals itself. Both Chris and the twins are more overtly, actively friendly to strangers than many other people I know. Saying hello, smiling, sometimes staring (definitely considered rude by some), but it is clearly an observation and awareness of others that many of us believe need to be kept secret for some reason.
My brother loves to attend performances of many kinds, especially musical performances. He will encourage the performers from the audience. Give them the thumbs-up sign or a wave. He is often the first on his feet to give a standing ovation and likes to go up to the stage and shake hands with the performers. (If any opportunity presents itself for him to get his hands on a microphone, so much the better!)
And last night, too, when Mom, Dad, Chris, and I arrived at the airport, Maggie and Emma’s greeting was contagious. Flapping, smiling, almost flying around the airport in their unconfined excitement over our arrival. For these and so many other reasons, I am eternally giving thanks for my specials.
In the brave new world into which it appears that we areheaded and the increased attention to rigid controlled and mandated “health” measures, escalating global surveillance, pressure to either join the party or be left behind, we are often led to believe there is only one way out of this madness. And that is continuing to comply with the government and systems of care or well, er die, aka exist on your own outside the system. This may or may not be true. I would like to believe we can still shift the trajectory if we refuse to consent AND find a way to rebuild these systems of care. I wrote the following after strongly aligning myself with the health freedom movement but then realizing that I’d be leaving family members who have various levels of special needs, behind. So I wrote this piece as an outreach to share what I feel is a primal cry, (maybe just my primal cry) of, we are worthy. Worthy of these health freedoms, of freedom in general. We too cannot be left behind. So at the risk of alienating those who aren’t in this thought stream yet, I’m going out on a limb and sharing this narrative.
Special needs kids and often their entire families are already blockchained. Surveilled. Tracked. On the grid. In the matrix. However you want to word it. Their data, our data, is being uploaded daily. It has been for years and years. From your first IEP meeting until you die or exit the system. It’s pretty much a requirement if you want to participate in the systems of care that are available for those in this country with a disability to the level that the family resources and alternative support systems cannot make a more functional contribution to your child’s or your “well being” than, well…..er….the government and public educations system and other systems of care. And for so many it IS better, provides some level of solid ground under what can be utter chaos when you need help and/or cannot help your kid learn or behave. That’s all well and good but it becomes apparent that more is needed very quickly. More activities, more social networks, more quality of life and soul enriching options, even though we’re already chasing a million different siloed service providers. Supplementing systemic offerings is beyond the finances and/or the capacity of a majority of families. So we deal, we do what we can on the side, we self hack and DIY as much as possible and we watch as we fall deeper and deeper into what is truly medical apartheid and we don’t even know it.
Over time, most OG caregivers, those affected, many within this whole sector of society starts to realize they are caught in somewhat of a trap. But, it’s often “too late” to exit. We deal. We live low on the food chain. We keep our mouths shut and we live by as many of the rules we can follow. We own few possessions, no visions of moving up the socioeconomic ladder, no time to meet all of all of our needs, put on medication after medication, test bunnies for the medical system, mired in mental health issues which ultimately can lead to just circling the drain of despair on a daily basis. But don’t think for a minute many of us don’t know we’ve bought in and let the tears run down our face as we turn back into our precious lives and make the best of it. I am GD grateful for this path b/c I would not be here now to share these truths from my heart and soul and get a convo going on this…
Since covid, there’s been so much more awareness of the fact that even within these grim circumstances we can all take steps to help ourselves. We can learn to live with less and define what we really need in life. And thank God for that. In many communities, there is so much info being shared, ways to creatively and frugally supplement what we already are doing without dying on the street trying to manage it all. It’s been a phenomenal silver lining. There is also this thing called the health freedom movement. I was not aware of the health freedom movement until covid started and am so freaking glad I found these groups of people. While I take what resonates and leave the rest, overall they are putting incredibly helpful, deep and soul expanding info and content all the time, if you know where to look. Less so since censorship has ramped up.
Anyway, I have followed many of these groups and individuals who come from as wide a range of careers and lived experiences as you can imagine. Often they’ve had their own wake up call related to broken systems of care and systemic dependence and have jumped ship, taken responsibility for their own health and well being and are teaching others to do the same. But, as I mentioned earlier, it’s not all that easy to move to an off the grid, take care of ourselves mindset when you’ve got complicated issues for which you trusted we had a government and systems that actually wanted to see you improve your quality of life.
The health freedom and overall freedom movements have gained momentum, and provided new awareness and insight related to the dangers of well, everything related to our systems of care, food system, medical system, legal system, social services, etc and how it all feeds the blockchain records. They also educate on the dystopian New World Order and the nefarious players behind much of the use of the pandemic to usher in what is being sold as the only way for humanity to move forward. The natural life/health freedom/freedom people have clarified the dangers of a future where data and AI usurp us and we are merely cogs in some abstract wheel we’ve been biologically invaded to believe is helping and serving us. Slowly we will be taken over by nanotech, biosensors and IoBNT (internet of bio nano things), until we are not ourselves in any divine and natural way.
So as I contemplate this brave new dystopian world from the perspective of it being a war on our consciousness, I keep asking how exactly can we exit these broken and crumbling systems of care as humans, a parents, caregivers of those who are now somewhat or massively dependent on for their survival? Their physical survival anyway. We’ve got diagnoses across the board and there’s a multitude of ways to become and be dependent of some aspect of the systems. We have been lured in by horrific experiences like witnessing 3 hour seizures and the like and been told that the only way out is through the hallowed gates of government support and increasing dependence on these creaking and cracked systems. So are we…. The whole sector of society that IS dependent in whatever way, effed?. Does that mean the health freedom movement writes us all off b/c we cannot exit the system fast enough?
We cannot give up dependence in some all or nothing swoop. It is a process. An awakening and awareness for most that is complicated by our own battle scars which we keep close as remembrances. I pray we have the ability to continue the process of exiting the systems of care b/c the all or nothing jump it seems so many are suggesting is the best course of action, out of systems and dependence, would cost lives and exponentially increase suffering. I understand that we are far far more than this one lifetime and that we are all multidimensional beings who chose this path and this incarnation, but shit. Have you seen a 3 hour seizure? I’m not saying there is not a way out but help me please here. We cannot face that much loss and grief in one lifetime and I don’t think you can understand this until you’ve walked a mile in our shoes and then lived embedded in our lives for at least some amount of time, how the fears of the shoe dropping are an ever present, very real thought and circumstance.
Special needs individuals, families, those with disabilities get on blockchain and are dependent on systems b/c in the moment it’s less suffering and for many, we cannot see any other way to survive in this time/space continuum into which we incarnated. We sign sign sign and bow bow bow our rights away. We are made to feel as if there is no choice. I probably need to write another blog to describe how that even happens. We let ourselves be uploaded, poked, prodded, tested, analyzed and made a data point. However, we the people of the special needs, disabled, dependent and their families/caregivers want health freedom too in whatever measure we can integrate it. Well, maybe not all of us but many. We often are not as bought and sold by the system as external perception might lead one to believe. We are juggling a lot of balls within the tower of babel and can often barely lift our heads for a moment and look away from the massive hole we’ve been digging collectively. The one that we now are keen to, that we know will bury us if we can’t also find a way out that allows for some contingencies.
Love is the answer. I know that profoundly. We will not consent at a soul level to this new world order where we are asked to sacrifice our soul’s path for a world disconnected and departed from what it means to be a natural human, a visible reflection of the invisible God and either host to or teachers here to show the world in the deepest way what it means to find abundance and joy, while also circling the drain of despair. Hear us now and let’s find a way up and out that works across a spectrum of monumental societal dependence. My thought is bit by bit. We do what we can where we are. We work to stay connected with each other despite our personal limitations and we listen to each other’s lived experience and we find a way to tell the tales to the rest of the world. ❤ Stay tuned.
So I wanna talk about this guy I know. I met him a few years ago at a meeting. Now I’m not going to say what kind of meeting, but all two of you who follow my blog and/or read my bio, probably can guess what kind of meeting. Anyways….I walk into a meeting and there’s this guy there, I was guessing probably late fifties, glasses, short, skinny, nothing remarkable, really quirky. He looks like he might have something wrong with one of his eyes, maybe a glass eye, not sure. He swears a lot when sharing. It’s funny though and it doesn’t bother me as I like to swear a lot as well. Sometimes when most of one’s vices are taken away, even if for the better, swearing seems to help. It helps him deliver his message, and that is one of incredible inspiration, depth and hope.
This dude comes up to me after the meeting, I was new and he knew it. New people stand out like a sore thumb, even though they don’t think they do. I didn’t sense any “hitting on me” vibes at all. None. Regardless, he told me to “keep coming” and asked me about myself, etc. There was this ease I felt in his presence, as if I could tell him anything about my sordid past and he wouldn’t judge me because ultimately, he’d probably done worse. I kept coming to meetings, like he suggested and I was impressed with how consistently nice this guy was to me and from my observations, to everyone else.
All the newcomers seem to have this sort of energy, steam coming off the fresh roadkill, and that was me. I was reeling, head spinning, trying to figure out how the hell I got to where I was and how in the hell anything was going to get better. I saw Paul’s face at almost every meeting I went to and within time, we were friends. He always came in with this woman and I thought for awhile that was his girlfriend, but it was not. It was another lost soul who had latched on to his positive vibration and was hoping some of it would radiate to her. Unfortunately, in this situation, it did not and she ended up dying young. After her death, in our grief, a bond was formed as we both really could understand this woman and her ways. On some level, we both knew she’d only be with us for awhile we had to accept that is just the way it goes, as loss too is a part of this rough game of life. I learned, as I watched him grieve the loss of his best friend , and come through it in such an honorable, authentic way.
You see, Paul was a heroin addict. His journey back to sobriety was one of gut wrenching proportions where he descended to a black hell at his own hand, as horrific as any of which I’ve ever heard described. His stories from his days of addiction are as unbelievable as they are at times, hilarious. No matter what, Paul brings his past to life to help us all remember that a new way of living is possible. He lost a lot. His physical health took a hit, as did his financial situation, his family, his son and much more. He was often arrested and spent time in jails, detoxes and rehabs. He was a hopeless case. But, as I believe there are no coincidences in life, he got better. Middle age recovery is rough when you’ve lost it all, however, grace is abundant and spiritual abundance was made available to Paul and he took it. He was so broken and cracked that wildflowers grew right up through his soul and made it beautiful.
His purpose to me is clear and illustrates how little financial wealth and success are not necessary to true joy and peace. This man’s path has been so difficult but as he opens to the power of love on a daily basis, this enables him to touch so many lives and has been the touchstone of transformation in my life as well. Now he is leaving us. Soon. Like in a few days… and I am in some sort of denial phase of grief. He’s said for awhile now that he hates winter and is “moving to Florida”. Well, folks, he’s finally doing it. His cats are leaving first and if there’s anything we all know about Paul, it’s that he’d never abandon his cats. I know this has been a tough choice for him to leave behind his community here but it makes sense for many reasons and in some ways, his work here is done. It is now time to carry the message to new faces sitting at the table, much like me, who are ready to groove with “faith, hope and love, the greatest of these is love”. We’ll miss you Paul. Godspeed!!!
Saying goodbye to Paul.
Written April 11, 2021.
I stand here in my office wearing my abundance beads, winter hat on, standing at my desk, poised to let this rip. Last week I got a text from an old friend who I met at a meeting, from whom I’d drifted away. She mentioned there was going to be a gathering locally to spread Paul’s ashes at a local state park….
Since I wrote this blog, back in October of 2015, Paul has passed. On May 19, 2020, he dropped his body and moved on to his next adventure in the ether and oh how deeply he will be missed and how much he was loved. I know he knows this. I have felt his presence many times since his passing, and often wonder if part of his next adventure is as guardian angel or spirit guide to the many many people whose lives he touched over the course of his wild rugged crazy and blessed life. I know I dial him up, upstairs, on a regular basis. We chat on the back roads of Rutland MA, while I’m out running or walking. Something will remind me to say hello…. some old Paul-isim will rattle around, “would you rather be right or happy?,”…or “don’t worry Jill, you’re just another bozo on the bus”. Ideas and concepts we’d hashed over as we drove to meetings or hung out at his place out at Cool Sandy Beach, or occasionally on the phone. We didn’t always see eye to eye but he was willing to hear me, take what I had to say seriously, chew on it and continue the discussion. This was a gift, particularly at this point in my journey.
Back to the story. Yikes! I’d have to walk back into the life from which I’d walked away. However, my higher self was yanking my ego’s chain. I knew I had to go. Meeting up ahead of time with my good friend and fellow past program buddy eased the awkwardness of walking back into a group of people who’s dictates and doctrines I’d all but abandoned. I was ok with me and my pot smokin’ aka medical cannabis ways, but still, anticipated some awkward moments. So thanks Carol for having my back.
Before Paul left for Florida, I was pulling away from the program. It was a bit rough because I knew this program was life or death for him, the very breath he breathed and that had graced him with an intense connection to God, source, one that he was never going to fuck with. AA worked for him, and he worked it more than any person I’ve met to date. I still had to pull away. I was dredging up years of trauma and after trying to do this within the systems in place for recovery and not feeling as if I could really get to the heart of the matter, I just let go. I’d started using sacred cannabis around this time, and it was a godsend but didn’t jibe with the program paradigm and crowd. I was honest with Paul about this, and he gave me his full support. He was open minded enough to know and understand that medical cannabis helped many people and as I explained why I decided to use it and what it was doing for me, he actually became more curious about it as a potential option for his own massive and complicated health issues.
Looking back at Paul’s well-being when I knew him, while ragingly sober, he was overmedicated, with pharmaceuticals, as is the system’s way, and fell prey to mainstream medicine’s disconnected and very clinical way of treating someone who was an alcoholic with chronic health problems. He was somewhat of a slave to the system, at the mercy of MassHealth, and trying to independently manage some serious health conditions. Between the past alcohol and drug abuse and the toll that took on his body, as well as the pharma dump once in recovery that he had to accept, the lack of holistic intervention regarding diet and exercise and the disconnected treatments he received, it’s a wonder he lasted as long as he did. I think cannabis could have helped him, but I also think it was beyond his ability to find the resources and support to integrate that and it all played as it was supposed to.
So that’s all water under the bridge but giving some context here. Anyway, Paul left for FLA soon after I “picked up” cannabis and after he left, I pulled away from the program even more. I know I had some hard feelings about it for a while, I missed people, but not much of the dogma and doctrine which rattled around in my head like a loaded gun. For many it is not such a roadblock and I do get that. For me it was. Many triggers. I am grateful it was there, and multitudes of respect to all the souls whose path I crossed while walking together in that paradigm on our way closer to home, to unity, to love. It’s what we’re here to do and most in AA come to believe this.
After Paul moved, I lost touch with him almost completely. It occasionally guilted the eff out of me, but I was buried and just truthfully started focusing on other things. It all played as it was supposed to play because I know we all planned this, written in our Akash. We planned to drop in and all cross paths with Paul in profound ways that changed all of our lives for having known him. It was no accident. Nothing is.
The gathering was lovely. Planned by a few of Paul’s closest friends, they’d been able to get some of his ashes from his sister in Florida and had brought coffee and munchkins from Dunks for us to have after the ceremony. Dunks was a huge part of Paul’s persona. He charmed entire franchises with his laid-back hippie-found-Jesus vibe, humility, and humanity. We hit dunks before every meeting. And I am dead serious. Every meeting. Dunks and AA are like cheese and crackers.
We all stood around in a circle, one of the planners of this event talked a bit about Paul and AA, read some passages and then led us in the serenity prayer. I was glad to remember this beautiful poetry. Finally, we each went up, shared a Paul laced memory and spooned up some of his ashes to cast into the wind. Love flowed through as it really does so much in this sacred program that certainly leads many out of the darkness. We love you Paul, our teacher, our friend, you got our soul’s winking and our hearts open, thanks for dropping in.
Wrapping this up, I want to make it clear that I am not trying to bash AA or the 12 step program. It’s fantastic, it’s just that my path needed to expand a bit, and that required risking leaving the safety net of repetition, kind caring people and multitudes of truth to go it “alone”. I had to find my own God spark and learn how to connect after unconscious, chaotic years where my soul was floating somewhere outside of my body and I’d lost all sense of connection to something higher. AA was the first safety net in which I landed, there have been several since but I can say with much confidence that I am now firmly grounded on mother earth despite many branches still subject to weather patterns and the ravages of time.
The more I dig in, the more I realize how deep and wide the propaganda has been and how it’s almost become an appendage that we cannot get rid of without fundamentally changing who we are. We have been fooled or played or ignorant, however you want to word it, about the nature of reality and the fragility of our systems due to overspecialization, diversification leading to the need to compartmentalize so many aspects of our life in order to function. In the process of our society almost demanding of us that we do this, we’ve developed some bad habits, some disconnects and some dysfunction in the way we are able to do and say things that ultimately make no sense and adopt thoughts and ideas that do not reflect novel or enlightened thinking but more repetition of the status quo with no room for evolution.
I do not know how to get it out. I do not know how everyone can go along and pretend this is not happening. I feel like my heart is breaking and there is a part of my mind that is shadowed and dark as I try to figure out how to go forward. Does it even matter? I am such a little person. I am dependent on a fixed income, other people. I resent the fuck out of this but in order to go forward and try to make sure we all survived or whatever I was doing in the first 50 years of this lifetime, I know am in bondage to systems and individuals and I cannot just get up and walk away. I cannot. I love you all. I also cannot live in this place where everyone thinks I’m on some extreme tangent and am half-crazy anyway and oh poor poor broken Jill….b/c they are so embedded in the narrative they can’t see it. Once you see it it’s hard to unsee it and go back to pretending we’re comfortable. I do not have resources, except within.
I ran far into the fire and existed in cycles of trauma and unconscious behavior and now I am beholden to many. I have tried my best to be responsible and do “the right thing” for my children and in life. Somehow, I could never really be the authority figure that it seems like was required of me to go through the process of separating and moving on with my life as an individual. I feel my soul is tied to my offspring, but it’s getting harder and harder to hold on and ride these waves, and know what I ‘know, remember what I remember. It isn’t credible to anyone really but me. I know what I lived through and how the experiences taught me over and over how broken our systems of care are and how so many people are not giving us the full picture but the picture they are providing carries so much weight that it’s required of us to gaze upon that and not avert our eyes at all to see what else might be helpful.
I let myself be bought ultimately to survive and I bought it hook line and sinker. I dove into the western medicine narrative and scoffed at anything alternative. “What a fuckin joke”, I thought as I got my 5th epidural for my fifth kid. How could anyone consider natural childbirth when the modern way was so much more predictable and clinical? I’d been conditioned to believe it to such a deep degree that I had no idea how far I have drifted from myself. Starting when I was 19 and my mother scheduled an appointment with a gynecologist to get me on birth control before I got married at age 20 to my first serious boyfriend that I did not really love…(I was deep state in evangelical Christianity) but knew I didn’t want to live at home and had to play along with this future/life/career/independence thing. It did not make much sense to me. I was still emotionally an innocent child. However, I thought I could bury the part of me that knew the whole thing was fucked. I would layer on focus on all the roles….housewife, good wife, partner, responsible adult and eventually mother. I did not go into it with the right attitude, education or understanding of the level of responsibility I was passively accepting, and thus the level of my passive aggressive behavior throughout periods of my life is truly deplorable. Hard to forgive.
Anyway, the birth control pills…the first prescription I really ever had. It was a nightmare. I felt different. Everything was different. I couldn’t run well. Running was my currency, my grounding, my saving grace… on birth control, my body was changing. I hated it. Prior to starting this pharmaceutical, I figured out a system to manage my physical reality, within reason. But, I also didn’t want to get pregnant. I was very disciplined yet was able to live a quality of life and had been finally getting my feet under me away from home in college when I felt the pull of having to figure it out and find my way……surrounded by people somewhat like me, who were either selling out a bit, and could adopt the fundamentalist Xian narrative to survive, or far more advanced in understanding the deep truths behind the dogma we were being taught at a young age.
All I know is I had no clue. On birth control, I became severely bulimic, depressed, and finally leaned on alcohol and anti-depressants to get out of this life….a life of constant disagreement and disconnect with my husband, fueled mostly by naivete, pig headedness and deeply wired survival skills that were becoming toxic. I moved on to my next relationship which I thought was the holy grail. I did not know I had to heal myself first. Long story short, I ended up with 5 children and each child was born not with the planning and hope that seems typical, but more as a way of surviving. Trying to save my first marriage, or something…. And not even trying or planning to have a child, it just happened. And then again. And again. I refused to use birth control pills or hormones b/c I knew the hell that brought on. So I tried other methods but was pretty healthy and fertile and then I needed to have more kids to have some sort of hope. So here I am with 3 of my 5 children that have significant special needs all over the map. I endured a traumatic end to my second marriage that still haunts me to this day. I bargained with the dark side and now I must pay the price.
Circling back to western medicine. When my kids ended up with Tuberous Sclerosis Complex, I became immersed in understanding the “science” of it and learning as much as I could. Despite having 3 children with the diagnosis that I managed to keep alive and are to this day, doing pretty well, I am never given any respect for having figured any of that out. All the endless medications and appointments that ultimately made their diagnoses more complicated and disconnected, all the educational meetings and interventions that were sorely inadequate and lacking in integrating any of the medical or psychological aspects of caring for children into understanding how to possibly see what was needed, no all this is on the parent. It is asking a lot of one parent, but I did my best.
When I realized that it is impossible to maintain educational, medical, behavioral, and spiritual needs of my children without sacrificing every single minute of my day for little gain, I started to let go. I started to question and talk to other parents and realize that it wasn’t just me, but other people too that struggled to manage everything and often questioned themselves if the systems were set up to keep people oppressed and dependent. We whispered about it and lauded the doctors because when you have kids that seize and rage, you will sell your soul right to the devil, on the front lawn of church to stop the horrors. The many many horrors of three-hour seizures and head banging on cement and bloody arms and noses and screaming and tantrums and basic chaos daily. So, you will take the pills gladly and bow at the altar of allopathic medicine, yes please stop these symptoms. Even though I have had renowned neurologists confess to me that it’s all an art form and they are totally guessing much of the time. But at the same time, there’s no room to question or explore or lift one’s head long enough to see that the treatment might be part of the problem for these people with TSC, and all of us, really, in the US. I am tired of lying about it b/c it feels wrong to stay quiet anymore.
Once I realized the endocannabinoid system was a major physiologic system and was not included in any of the organ based methodological, allopathic medical schools or understanding of medicine, I let go again. I decided once and for all I could not trust the doctors. I would have to figure this out on my own. I would still use them, but I did not believe them when they suggested treatments and medications that I’d done the research on and had realized were very harmful long term. It would be said that I am risking their lives, playing with fire, but I still do not see it that way. When you dose 2 kids every day for 20 years with at least 7 medications, strong medications, and watch them slide into more suffering, more downstream diagnoses, when you yourself were able to save yourself and get off your medications and manage your own health b/c you do not have TSC, it becomes obvious that something is amuck and it becomes exhausting. Basically, you are living in despair if you look too closely and think about the future. As I type, I have a 24 year old daughter in a group home who I haven’t spent more than 30 minutes with literally since March. This is another blog.
So when I got my19 year old son with TSC to use some cannabis and it made a dramatic impact, once again, I realized that so much of the lack of support within the medical community for this regimen is based on fear of liability issues, fear on the behalf of big pharma. All that support this organ based methodology, fear that they will lose…(money, respect, stature, etc) if people figure out they can put cbd oil in capsules and make their own medicine from plants and don’t need the toxic pills. And there’s also static from educators that also have been brainwashed by leftover reefer madness and know our tumultuous family history and will use that like a machete to sweep the legs out from under a parent like me, by tossing shame and blame and basic “bad mom” agenda my way.
When covid hit I was a bit fearful at first but after time passed and I didn’t really see the intensity of the impact based on how it was blown up on the media – I imagined that bodies would be piling up in the street- I still was very cautious and remained somewhat in belief of the narrative. That is until after I got my son with TSC using cannabis shortly after the first lockdown, and I was able to get him down or off some of his meds. It was like a light turned on, connections being made like never before and I was like, oh shit, this is real, I can’t go back. I have the time and understanding to know where to look for info and who to listen to and how to find information to support my understanding. He is healing. It’s a wandering journey but he has access to his own consciousness, through this rather minor tweak! All these meds, all these regimens, all this fear and dependence on systems of care had kept me trapped and from seeing options and believing little old me with no fancy degrees, no important career, could figure this out and help my own kids.
Once I realized I could do this, I had to go forward carrying that knowledge that a natural medicine could facilitate this change and so following that knowledge, there’s just no doubt in my mind that COVID-19, is in large part a political and government ploy to get control of the population that is out of control. The very idea that we need a vaccine to get everyone on track when there are other options to take care of ourselves, but they require personal questioning, exploration, and research. Look around you. We are an overweight, out of shape, stressed out nation, who have been taught to seek salvation and direction externally. We are easy prey. Set up a society to be dependent and fearful on a top heavy power structure for a long period of time and we develop a sort of Stockholm Syndrome. Trust me, I know. I lived in a marriage where I woke up with the first thought in my mind being, I hope he has matching socks today, so the day doesn’t start with yelling. I’ve woken up knowing that my daughter would be verbally admonished, and that I had to try and protect her no matter what that meant. And that her father ultimately was also scared as fuck and didn’t know how to deal thus reacted to his own deep-seated fears with anger. I had to follow the narrative and get the help from those who would at least keep our kids alive. I did not have time to think. So I do get people living in fear and what it does to you. Add in a hefty dose of psychiatric meds that were necessary to endure these mind fucks and what do you get? And what came first? You put people with unresolved trauma in a relationship and add on the stress of 4 children, 3 with TSC, there’s bound to be some drama and control thrown around. A bird in a cage that will ultimately be only focused on survival at all costs, not living and growing and thriving. Willing to pay the jailer for a short term solution.
I see it starting to happen now. We are conditioned to feel powerless and afraid over time and soon it becomes a new normal. We lash out when it is questioned b/c we don’t want to look beneath the surface. Even if it does not make sense. The longer it goes on, the worse it gets to the point where it’s almost laughable. Seeing people on the rail trail wearing masks while exercising still triggers me. People wearing masks in their car, at the grocery store. Muzzled. Eyes darting and looking for anyone who is not following along so they can have a whipping boy. People wear these things like a fucken badge of honor. Reality and science have taken two different paths. The science on masks is unclear enough to warrant a mandate except in very specific situations. The lockdowns which have been criticized even by the WHO, the arbitrator of law lately, has said lockdowns are ineffective. So how is this still even going on? And can anyone but me see that if everyone must be tested multiple times in a week, there are going to be more positives? Has anyone read about the evolution of the PCR test and the fact that it’s creator has said on record that a PCR test should not be used to isolate a virus in this manner? There’s too much room for error and recommendations for setting the test to a certain number of cycles above a threshold leads to exponentially more positive cases. But we’ve disconnected…we hear the news ranting on about more cases more cases and are electrified. It’s uncanny. It’s almost as if we’re addicted to the show.
Except that there are people suffering with COVID-19 and that is not funny. We have what is essentially a bad flu year with a microscope on every bit of minutia related to this year’s special strain. Another wakeup call was learning that the total number of deaths each year for the last five years has NOT been exceeded this year! (see image below) If so many people are dying of covid, wouldn’t the death count be through the roof this year? But it is not. Strangely enough, there are very few flu cases and many people are diagnosed with covid over the phone, without a test, based on symptoms alone. My own daughter had a positive covid test 2 weeks after being exposed and having a few sniffles. 2 weeks later, after feeling fine and living her life, she got a positive test. What the heck? Many deaths are marked as death from covid 19 even if another condition precipitated. We are all over the map in assessing the magnitude of impact. The major group affected by this wild flu is the elderly. I am not being callous, but we need to remember as a collective that people get sick, people get the flu, people die. It is how it goes. We cannot live in such fear of death we will harm ourselves and our quality of lifelong term to attempt to defy this fact. We must focus on what we can do in the here and now to help ourselves b/c my friends, the help is not going to come from the powers that be in the western medical system.
It is imperative that we must learn to help ourselves. Invest in our own physical, mental, emotional, and spiritual health. We do not need anyone telling us how to do this or what to do. We have figure it out for ourselves. We can ask for help and we can look to others who have outcomes that we respect and who are lightworkers to exemplify. There are doctors and scientists out there that are speaking a broader truth. Buddha at the gas pump and all. But we cannot allow government and corporate entities to force treatments on us that are not proven safe and for which there is no good reason to utilize. The fact that my own family has completely followed the mainstream narrative, as have most of my friends, is very very distressing and I have never felt so alone but at the same time known I can’t just shut it off, pretend I don’t see it or know and go on. I must find a way to exist or I must not exist.
I honestly have no idea how to do it and am calling all angels, all spiritual guides, all celestial beings to help. I finally understand a missing piece. And that is natural law. I have been attuned to it since birth, and I cannot ignore it despite my attempts. I have been able to see the futility in the pursuits that provide income and security and which the average person embraces with ease. It never really stuck. My dad taught me early what really matters is our heart and our relationship to the father son and holy spirit, to ourselves our higher being, to truth. So it’s been a complete adventure getting back to the point where I understand now why I couldn’t just fit in. If it went against natural law, I had to be medicated and altered to do it. Pharmaceuticals numbed me, clouded my vision and mind. Plant medicine, while having a psychoactive affect, it does not numb me or bar me from seeing behind the falsity and lies of the house of sand we have built in modern times. I don’t know where this will lead me, how it will lead me, what I will have to give up and leave behind but I fear that if I don’t, I will lose pieces of my soul and will not be able to exist in this physical realm. I am exhausted.
If anyone is interested, I’ve started a group on Telegram to discuss thoughts, feelings, share information and offer encouragement and support: https://t.me/tsctalk
I can’t even put into words what it’s like to finally get your deepest concerns for your children’s well-being confirmed. For a long long time, I’ve had a sneaking suspicion that the many medications prescribed for my 3 children with Tuberous Sclerosis Complex were not all necessarily contributing to longevity, quality of life and/or actually doing anything more than mitigating some side effects from another medication. And in several circumstances, actually making symptoms worse. It’s like waking up to realize your worst nightmare is actually real and that in order to address the situation, you’ll have to go against the embedded ignorance, fear and doubt to take matters into your own hands and go off the grid to go on. You’ll probably lose the support of many, including your own family. When you have three children with a genetic condition such as TSC you’ve known for a long time that life is unfair, and you’d have to accept that on a very deep level and be ok with that in order to remain sane.
Photo by Pixabay on Pexels.com
So you play along, educate yourself, immerse yourself in reading and learning everything you can get your hands on in order to navigate the medical system and get your kids the best possible care. If it means moving, changing jobs, willfully making choice after choice between a rock and a hard place to ensure good relationships with their medical team, educational team, social services team, mental health team, your ex-husband, your friends, your family, extended family, you do it. You suck it up and smile and nod and bend as much as possible to make things work. For years. Even when things fall apart, repeatedly and you end up falling apart, you still remember to be polite and advocate for them in the midst of some tornadoes of circumstance and trauma that are too painful to recount. You band-aid yourself together and do what it takes, even if it hurts you as a human being. Even if you have to “break the law”, sacrifice relationships, career options, your own sense of ethics and morality, and more just to keep them alive. You find yourself caught repeatedly in the mindset of …” It’s just a lifetime after all.” You’ll get another million lifetimes so what if you run like mad and push yourself to the extreme until you drop dead in this lifetime? So, the fuck what? It’s what moms, dads, families everywhere do, what many do because there is no other obvious choice and we are often too caught in action and reaction to even consider there might be another way.
When you first get a diagnosis, you die a little but then you have to move on to hopeful. You sign on to worshipping those with medical training and knowledge even as time passes and your lived experiences outpaces anything they can even come close to understanding about living with a chronic condition like TSC. You still blow the docs. Metaphorically of course. And whoever else you think might help get you better care for your kids. And I guess it’s helped. (switching to first-person). We’ve had doors open and received great care overall in all the siloed silos of the medical-industrial complex and the other fringe institutions such as mental health and social services. We’ve done better than some and the kids are all still alive. Here’s the thing. I don’t think I can do it anymore after learning what I’ve learned over the course of the last 6 months.
This is how I’m going forward:
I want to know why each medication is prescribed, not just a simple answer but the metabolic pathways of each medication, why these medications were chosen in combination, the interactions between the ones being taken currently, how the effect of each is impacted by the other medications they are on, the potential interactions with other over the counter supplements and foods, the research used in deciding to use these meds and the long term impact of taking these meds, in combination and how it’s contributing to overall health and wellness over their lifetime. Would you take them yourself? Would you give them to your children? Are all prescribers collaborating on dose changes and how that impacts the other medications they’re on? I want to know.
Regardless, until I have investigated cannabinoid medicine and consulted with those utilizing this option that have had success decreasing or eliminating pharma significantly or completely, I will not go gently into this good night and I will not sit down and be quiet. These are my precious loved ones. Human beings for whom I have been responsible for the last 23 years. I’ve watched from the sidelines helplessly and wondered the whys and how’s I just mentioned yet I trusted. Now I learn that my trust may have been misassigned and many of the medications they are now on are not necessarily contributing to anything other than a bandaid on a bullet hole. They have a condition that affects many bodily organs, a systemic condition and rarely has there been a holistic consideration given to any aspect of their care. A bit more so before they aged into their late teens but progressively it’s become worse.
They will be physically compromised for life if they remain on these medications long term and most likely develop various other physical problems because of the medications. I’ve been fighting tooth and nail for some level of stability for these kids. For some hope. And now I am realizing there is none unless I find a better way. I’m killing myself already trying to help them. Every seizure is a setback
I watched as my post-ictal daughter sat on the bathroom floor after suffering a breakthrough seizure. We heard her in the bathroom but didn’t realize she was having a seizure. We thought my son was in there banging around, getting frustrated with shaving or something but no, she was having a nasty tonic clonic seizure. My reaction to this was complete furor. This is the first time I’ve reacted as such.
I’ve seen this show too frequentlyfor too long and have now learned too much to just go back to blowing the docs and resorting to the ever kind and friendly parent who tries to see the bigger picture and work with all the docs, educators, social service providers and be endlessly humble, grateful with no lingering resentments. It’s been a lot of time folks. Over and over, in one-way shape or form or another. By all counts, if it wasn’t for modern medicine, these kids would be dead. So do I owe blind allegiance to modern medicine for the rest of their lives, even though I am not sure it’s not slowly killing them? I realized that I have come to the end of my rope managing their TSC and unless I have room to use cannabinoid medicine to try and wean them off some of this pharma, I am not going to be able to case manage anymore.
I was angry about Sara’s recent seizure b/c I knew what the outcome would be. My heart was already broken and is broken in some way daily. Sara would go to the ER, they’d check her over, check her bloodwork and send her home. We’d report the seizure to the neurologist and they’d up the dose of one of her meds. And try to figure out ways that we had been negligent, or she had overlooked something or something other than the mere fact that what’s going on isn’t helping. Sure, she’s better than many with TSC and sure I should be grateful, and I am. The doc from the ER made sure to remind me of all these facts. As if I should just accept it and move on, back to status quo. But is that how I’m supposed to roll? Now she cannot even think of pursuing her license for another 6 months. She’s a college student. She’s trying to move towards independence but the details of her pharma management and other medical care are more than she can take on adequately. I cannot afford to continue to case manage unless I have some support and guidance to try some other options.
Her day is hijacked by her symptoms. My days are hijacked by their symptoms. Many of which I squarely place the blame on the pharma. We’ve slowly over the last 7 years, chipped away at the other variables. Their mental health. All have received intense bouts of therapy, as have I. We’ve all attempted to improve our diet despite financial limitations. They’ve all become mindful of the importance of physical activity and yet so often there is just not the energy ever for this as the mental energy needed to start, is needed elsewhere right now. On med management. Or calling MassHealth. Or emailing and talking to doctors. That doesn’t include any other activities of daily living either. How much energy does an individual have after all when every single day some wild unknown, TSC related or not, will jump up and throw a wrench in best laid plans?
This is my jumping off point and why I am now passionate about this polypharmacy project. I want answers and I am not waiting for them; I am pursing the use of cannabinoid medicine right now. I’ve made the connections in order to start down this road and intend to follow through. I am scared shitless, broke, emotionally and physically exhausted but what I’ve learned from so many in cannabis industry is actually hopeful. Real hope. Not just hope that the seizures will stop or the chronic stomach issues, headaches, random illnesses, depression, anxiety, ADHD symptoms, or any of it but hope that maybe with collaborative and informed treatment with cannabinoid medicine, there whole being will start to find ways to heal. For more information on our latest work related to polypharmacy and cannabinoid medicine, visit our website at: https://tsctalks.com/tsc-talks-cbd-cannabinoid-testing-crowdfunding/ or email me at: firstname.lastname@example.org.
B.S.(Before Script)…in case you thought otherwise.
So, now summer has past and Jack just started back to school. He had a decent summer and is now attending the “post-grad” program at his local high school. The following post was written the day before he “graduated” and brings to light the fact that many young people with some measure of a disability are not able to receive a high school diploma due to circumstances beyond their control. I was all fired up about this huge issue at the beginning fo the summer, but time and more emergent challenges have pulled me away from the fierce frustration I feel when I think about all the loose ends left for Jack to navigate as he works to obtain the skills and knowledge he’ll need to move to counter the lack of an official high school diploma and seek to reach his personal goals of a job, a car, and some measure of independence.
Disability employment continues to be a challenge for many and while there seem to be more and more forward-minded options available, there are often many pieces of this puzzle that have to be considered on behalf of the individual who is seeking such services. Pieces that are often not a part of most of the programs offered through various employment rehabilitation services such as Mass Rehab Commission and other disability hubs that offer tons of options but little thought given to the daily realities of families needing to utilize said services for their loved ones. The main one I would like to mention is transportation. Public transportation is scarce in rural and even suburban areas. Parents & caregivers and/or other family members are often unable to provide transportation consistently to either the place of employment or training program or to other social events designed for those with similar challenges. What seems like a minor issue can often become a major barrier. So as Jack progresses in his “post-grad” program and is able to find some employment opportunities, I am hoping that we will be able to find creative workarounds to enable him to participate.
My son, Jack, 18 with moderate Tuberous Sclerosis Complex is “graduating” from Wachusett Regional High School this very evening. He’s getting a certificate of completion, NOT a high school diploma, which I signed on to for several reasons. Mostly because of TAND. What is TAND? It is land of confusion, is what it really is, but it stands for Tuberous Sclerosis Associated Neuropsychiatric Disorders and is basically the encompasses the entire umbrella of mental health diagnoses.
Jack receiving his Certificate of Completion
People that have TSC have a 90% chance of having some degree of TAND and not to digress, but it can be THEE most challenging aspect of a TSC diagnosis and often hits just when one has about had it up to the eyeballs with other aspects of TSC. So imagine as a parent, you’re trying to get a handle on your kid’s life-threatening seizures, stay on top of kidney manifestations, make sure you’re keeping up with the 55 or so prescriptions that need filled, refilled, negotiated, covered by insurance, taken your kid for various pokings and proddings such as blood tests, MRI scans, neuropsychiatric evals, school IEP meetings to name a few….and then, just when you pause to catch your breath, your kid starts acting like a wild animal. Seriously. An uncaged wildebeest. No one knew. There were whisperings and mutterings of “behaviors associated with TSC” and some writing on it, but not anything that was solid enough to catch the attention of professionals working with those impacted by these unbelievably intense behaviors.
This complete lack of understanding of TAND hijacked his entire educational experience up until about 3 years ago when things started to shift. We had to resort to dire measures including 3 psychiatric placements, locks on all our food and a lot of structure at home, routines, integration of mental health professionals, his medical team and his educational team to address his TAND related issues (aggression, rage, violent outbursts, anxiety, ADHD…probs more I can’t think of). He is now able to manage his behavior without escalating to the point where we have to ride out the TAND wave of anger/frustration/grief/sorrow, 80% of the time. Which is huge, coming from a kid that was attacking me, threatening and terrorizing his siblings, his teachers, his therapists, and basically raising unbridled havoc for a long time period. It was painful to experience for all of us and that certainly includes Jack.
As “graduation day” has been approaching and I consider the implications of this choice, I feel the need to share a glimpse of Jack’s story. I am offering a disclaimer at the start so those who might sense they need to brace themselves for a sob story or an angry rant, or a gut-wrenching tale of victimhood and persecution, you need not. The fact that this is happening is that there is no one to blame and doing so would only create further divisiveness and my goal in sharing this glimpse is to encourage connection and collaboration.
As I mentioned earlier, Jack was born with Tuberous Sclerosis Complex which is a condition that causes benign tumors to grow in different organs of the body. Jack started having seizures very early on in life and has been on many different medications to control his seizures. He’s also on many other medications to manage other aspects of his TSC, such as blood pressure medicine and one that controls the growth of tumors in his kidneys. Jack has had many hospitalizations, medical procedure, tests, and appointments and will need to manage the medical aspects of his disease for the rest of his life. While he is medically stable, and the prognosis is good for a typical life span, that requires close monitoring, frequent communication with his doctors and the pharmacy and much more.
Jack had seizures that lasted over 2 hours. Jack also had to change schools about 7 times during the course of his education within the WRSD to classrooms that were able to support the level of need his disability presented. There were no adequate programs for Jack anywhere that we could find because his behavior was so challenging.
Jack went through 3 psychiatric placements and many years of intensive therapy to learn to manage his behavior to the degree that he was able to learn to read. His behavior was so frightening at certain points that we thought he’d need residential placement. He was attacking his own family and we all needed to work together as a team to help support Jack as he started to learn to manage his own behavior.
Jack also had problems managing his impulsivity in relation to food. Because of his increasing weight and metabolic issues, his family went to desperate measures to limit his access to food that has included installing locks on fridge/freezer and pantry.
Jack has lost close to 100 lbs since we locked everything up.
Jack has finally started to read beyond a first-grade level.
Jack finally was able to participate in some school-related activities such as helping manage the JV men’s basketball team
Jack has overcome more in his short 18 years than most people will in a lifetime yet he is not earning a high school diploma.
So when he walks across that stage tonight, I will weep tears of joy and despair at the same time. Joy that he has made it this far and we did not have to institutionalize him. He is a happy, overall well-adjusted kid with TSC. Despair because despite all this, he reads at a third-grade level, he cannot fill out a job application, drive a car or manage his prescriptions or many medical and other appointments, communicate with social service providers, or interact with the team members of his hs “post grad” program. All that falls on me, well, not just me. Of course. It’s never just one person. There’s many, but on the frontlines, yes, it’s me. And mind you, I am not complaining, but I am tired.
There are many positives for Jack and I am confident he will make his way, with my help, my partner’s help, his father’s help, and the help of a significant number of other people in his life. There are incredible unknowns with TSC/TAND and Jack. I’ve got decent relationships with the team at his program to continue to facilitate his trajectory in an upward trending fashion. So what is my problem? I guess it’s just this continual wake-up call to the reality of the fact that there are not a lot of long term solutions for our kids and I’m going to be helping him for a while yet. TAND gets complicated, is complicated and for us, it took almost everything we had to get to the point where we weren’t existing in some level of fear daily. Behaviors started early. Schools are not prepared to understand TAND but now we have documentation to validate and advocate. I do not live with regrets but take advantage of the tools we have available to us in the TSC community, the TS Alliance, various Facebook boards, etc, etc. My two cents. Happy Graduation Day Jack. You’ve done your best and you and everyone who knows you is exceptionally proud.
How podcasting can build and gather information and motivate change within communities affected by rare medical diseases
Creating podcasts within communities affected by a particular disease, and initiating the discussion between parents/caregivers/patients in an interview format, is a progressive way to gather novel and unique information regarding the reality of living with a particular disease. Listeners can now hear how the medications and treatments prescribed or recommended, are actually experienced by patients/caregivers/parents. By listening to the voices of the patient population for which these medications and treatments were designed to help, particularly in an audio format with no visual distractions, much information can be gleaned that could be quite valuable in developing more specific, targeted treatments and medications.
The development of interview questions needs to be specific to the patient population for a particular disease in order to solicit adequate responses. This combined with actually hearing the human component in the voices of people talking about their experiences, often including much frustration and suffering, gives one a far more personal look at the lived experience of having this disease. The podcast model can better inform those listening that provide services to these populations more personal human insight and a shift in perception of what needs are imminent to this community
Check out the latest episode of TSC TALKS , Episode 10
The brave and articulate Renée L’Heureux talks to me about her experience of a TSC diagnosis at 39 weeks of pregnancy and the multitude of experiences and feelings that are a part of this particular TSC journey with her son Aaden, who at 10, is non-verbal.
I was blown away by Renee’s steady voice throughout, and her ability to continually make choices that reflect much maturity and strength in order to provide the best care for her son, despite her life circumstances. I truly hope other TSC Moms will give it a listen as it is much relevant for those just receiving a TSC diagnosis as well as for those more seasoned vets among us.
There is a lot of information to unpack and some highlights to listen for in particular are her experience with Vigabatrin and Infantile Spasms, the experience of getting approval and funding for brain surgery and the hurdles and barriers involved, ADHD symptoms, as well as impact on family, siblings, working with the school system to advocate for and support a child who is non-verbal, and much much more!
Renee hails from Winnipeg, Alberta but currently lives in Airdrie, Alberta.She discusses some of the differences in the Canadian healthcare system and education system. In light of our rather chaotic US politics lately, listeners take heed.Tune in this coming week for an episode with a school psychologist as well as a woman with TSC running Marine Corp Marathon for Team TSC, and on the ketogenic diet for seizure control… with lots more to come!
Recently, I was driving back home to Massachusetts from Connecticut with my three daughters in the car. My 22 year-old daughter moved into a shared living situation last April and this was the first trip we’d all made out to my mom’s since she moved out. I happened to be the one with the mental health issues this time, and for some reason driving home at night on the mass pike was almost more than I could handle. I was overcome with anxiety. I am not sure what it was, lack of sleep, combined with a bracing awareness of what’d we’d all been thru together and now here we were with daughter #1 back in the car, using all her ASD related coping mechanisms which never used to bother me. This time, I was gripped with almost panic! Somehow, I grounded myself by staring at the Wegman’s truck directly in front of me and prayed. Thankfully, we made it.
The neuropsychiatric aspects of a disease such as Tuberous Sclerosis Complex can be crippling. What is TSC?Click here. After much-lived experience in dealing with TSC related mental health issues, also known as neuropsychiatric issues, as well as my own refractory and integrated mental health issues. I am quite familiar, almost comfortable discussing. Due to the nature of TSC manifestations, particularly brain manifestations, these issues are almost unavoidable. In fact, I heard it tossed out by several different specialists, of the MD variety, that 90% of those diagnosed with TS, will be affected over the course of their lifetime by some level of neuropsychiatric issues.
Speaking of which, Iwas glad to attend some of the TAND (TSC Associated Neuropsychiatric Disorders) seminars given by Petrus DeVries at the World TSC Conference last month in Dallas, TX. Dr. DeVries developed the TAND checklist. This happens to be a phenomenal tool be given to all who receive a TSC diagnosis and then again screened at every office visit. Beautiful! I sat through the seminar with my jaw down around my feet, as it was almost a play by play guidebook, listing the multiple and many psych related issues with which we’ve dealt in the course of our family’s TSC challenges. I wish it was around when my kids were younger as I’ve mentioned, the mental health issues we’ve encountered both related directly to the neuropsychiatric manifestations of TSC as well as the fall out of managing these manifestations across the entire family, has been daunting.
It ain’t always easy to ask for mental health help over and over again and tell the story of TSC to unaware mental health professionals!! I vehemently encourage anyone involved in managing a TSC diagnosis to put a premium on their own mental health and be screened as well as their loved ones with TSC. Carry the TAND checklist everywhere you go
Parents, caregivers, other supporting players; If you don’t have your shit at least somewhat together as an individual and/or as a partner on this path of managing TSC, in whatever capacity, it behooves you to consider doing so. I don’t mean run right out and find a therapist, though that works too, at least make a mental note of this. The weight on relationships and a human, in general, can drive one not prepared in directions that one would never have imagined, and thus make it more difficult to be there for ourselves, and our loved ones with TSC. Talking about it out loud and knowing it is not all in your head and supporting each other are places to start.
It is this particular nuance of the overall cause of TSC awareness, that will be my personal platform for asking for contributions to the Marine Corp Marathon fundraiser I’m involved with as Team Ambassador. The carnage of my own PTSD and depression leaves me with a treatment program of proceeding one day at a time, staying grounded in the present and not allowing myself to be overtaken by past horrors, or projected future catastrophes.
As I’ve mentioned in past blogs, running as an outlet has been another tool that has been integral in my being able to manage the constant stress of dealing with uncertainty, that is TSC. I tend to bust out to run almost every day as I never know what potential crisis lurks in the shadows of the next 24 hours and having a good hard sweat under my belt, somehow helps tame the demons and wrangle the thought tangents that run rampant if left unchecked.
I have asked for money for this cause in the past (Boston Marathon 2016) and have been the recipient of an outpouring of love and support over the last few years. I’ve worked diligently to help my children with TSC gain the medical and psychological stability to each be able to overcome some incredible challenges to their physical and mental health and stand strong enough to start to make the journey to some level of independence.
I am grateful and pleased to report that they are all doing well! We have challenges every day in relation to some TSC related issue or some other life-related issue, but don’t we all have some kind of monumental challenge daily? I am often so inspired by others when I get the time to make a connection and hear that while not the same challenges, so many of us have overcome significant roadblocks to be able to thrive and contribute to their own realities, daily.
I am asking for your help. If you can support our fundraiser at this time, it would be wonderful. If you cannot, or already have, thank you and keep on praying for us. I would say faith has been an instrumental part of this journey for our family. The love from the local community, from behind the scenes, including social services, physicians/specialists, the Wachusett Regional School District, friends from past and present and of course, family and my soulmate. We couldn’t do any of this without you and let our cause be your cause as it is one that if a cure is found, has the potential to impact the outcomes for many other diseases and could truly bring much health and healing to many! Thank you isn’t enough, so stay tuned. I have a plan!
I had a bit of a re-entry crash on Sunday when I got home to Rutland MA. I had attended my first ever World TSC Conference in Dallas TX for the past 4 days with my mother. If you don’t know about TSC, click here. From what I learned, we are on the cutting edge of not only better diagnosis, treatments, and management of the disease but also finding a cure. The conference was ineffable, and I am forever moved and changed as a human being for having attended. I echo the sentiments of so many in these TSC related forums in their awe, respect, and inspiration for the TS Alliance and the incredible momentous effort involved behind the scenes making it look smooth as butter.
I had made plans to come to the conference and applied and received a scholarship but had put it out of my mind. So much else had been going on in our lives that I absolutely couldn’t even think about the World TSC Conference way far away at the end of July. Well, it came round and was almost time to go and suddenly, I didn’t want to. I’ve been a TSC Mom for 22 years, and have 3 with TSC and I didn’t want to go. “I’m a freak”, I thought, among other fear-related ideas. I dug in. I had decided in my obstinate, resistant way of thinking, that I had had enough of TSC, didn’t want to talk about it, think about it or hear about it any more for as long as I lived beyond what was necessary, and I was going to get a job and work and deal with the kids and their issues as needed, but really focus on my here and now.
The weight of TSC has been monumental in our lifetimes, as I’ve shared repeatedly, and was more keenly aware than ever, the significance and difficulty of with what we’ve been dealing when my oldest with TSC, MaryEllen, moved out in April to a shared living situation. One kid leaves and the filing cabinet that represents their TSC journey partially goes with them. Suddenly a light comes on as to why it’s been such a struggle. Anyway, I knew deep down, I had to go. So, with much encouragement from friends and family, I got on the plane with my mother and jetted off to the Big D.
Shortly after entering the breathtaking hotel, and seamlessly checking in despite having to update and change things related to my reservation down to the last minute (thanks Christen Bell), I sat down in our room and related to my mother that I wanted to go home. It once again felt like it was too much. I was freaking. My mom left me to my doldrums and I knew I had to switch the narrative and go join these people and engage. Every part of me was resisting. While I may appear to have it all together, successful runner, TSC volunteer, my children with TSC doing pretty well, behind the scenes there has been great personal cost and it hasn’t ever been easy.
Meeting people on FB and then meeting them in real life are entirely two different things. I came smack up against this in the hotel upon first arriving when I saw many many people I recognized from FB, knowing many of their personal stories, and they knew mine. I wanted to hug them and at the same time also, run and hide, which, as I mentioned, I did for a bit. It was too much at first. Periodically, throughout the conference, when things became too much. I took breathers and went to the room to chill, cry, reorganize my emotional state, and venture out again. It felt at times like I was reliving the diagnosis and manifestations of all three of my children with TSC as I sat through seminars and while it was a necessary process in order to properly engage, it was a bit rough on my ragged heart.
I’m glad I pushed through. It was amazing. I have never before had such an experience where everyone there had passion, vision, energy, and motivation cumulatively coming together for a mutual cause, and celebration of our successes as well as an honest look at where we can all do better. The ego-driven nature of today’s society, online and otherwise, was refreshingly absent and all you had to do was walk up to anyone and ask, “What is your TSC story?” or “What is your TSC connection?” and immediately you were engaged in a conversation.
We flew out early Sunday morning and I actually had to utilize the vomit bag on the plane. Gross. I know. That never has happened to me! As well, when we got back to my mother’s car at Logan Express in Framingham, she had a flat tire. Not only once in the parking lot but then again once on the mass pike. Thankfully, we made it home in one piece, albeit a bit ragged and exhausted. I was on edge and still wasn’t quite ready to go back to my responsibilities. Perhaps our tenacious trip home was a reminder to take the time to reflect on the experience to relate to you all.
My son Jack with TSC, my ex-husband and boyfriend/partner who wants us to use the language “soulmate” (seriously, he said this), had had a “minor snafu” with Jack’s meds, and there was no clear knowledge of what had been taken when, and exactly what meds were taken. I wanted to flip. Despite having this all this set up before I left, I couldn’t account for every circumstance, nor expect everyone else to and sometimes that is just the way it goes, especially, dealing with the nature of uncertainty and TSC with which we must deal. Jack was just fine, despite a day or two of sketchy medication management.
Of course, I wanted to start a rant in my head about no one but me being able to care properly for these kids and blah blah blah. But I didn’t. Because it isn’t true and what I’ve learned, and if there’s any one thing I have to share from all this lived experience as a TSC parent, is I cannot do it alone, and these kids can learn to do much for themselves. We all need much help from many, and that includes all the medical and psychological professionals, social workers, family members, soulmates, exes and their support people, and of course the TSC community. The list goes on and on. Being willing to risk asking for help and holding those from whom we’ve asked, accountable is another lesson to learn from. Email groups and FB pages and networking events such as this conference have solidly contributed to my ability to manage this experience.
My partner took one look at the conference agenda and said, “you could have led every one of those sessions”. Hah. Maybe. I honestly could have given input at least at all the ones related to living with TSC, relationships, siblings, and have experienced just about 80% of all the TSC manifestations and other related medical and psychological fall out related, and that is not an ego trip. It is simply true. We have lived and learned and been lucky, unlucky and all the points in between in this journey. It was nice of him to notice and for me to have that level of support and understanding.
In conclusion, if I didn’t connect with you, I’m chicken shit for missing the chance and apologize. I saw many whom I recognized and still wasn’t able with which to connect. I was not always as approachable as I would have liked. I could shoulda woulda coulda myself to death over all of it but I won’t because I think it was like this for everyone and is the nature of such an event. Those who I did connect, thank you. It meant more than you realized. You know who you are.
Two days out, my heart is full and I am now officially glad to be back as I slide into the work week and am uplifted, strengthened and buoyed by the energy and memories of this event and all of you TSC Moms out there who are doing your very best every single day, whether you feel like you are or not. You are. It’s never easy, this journey is hard, but it’s worth it. I love you all. Seriously.
My running pitch: I can’t even begin to explain to you how much running has been an elemental coping mechanism in my journey with TSC. For better or for worse, I have come to running as a corridor of freedom in a world that has often been complicated, chaotic, uncertain and downright scary. Time running has often opened channels of thought that enabled me to find ways to manage the stresses of everyday life as a TSC parent. I have been a TSC parent for the past 22 years. I am not here to share my martyrdom or sainthood or insanity, because you all have your own stories. I just am sharing to give you a glimpse of the depth of my inner motivation to help bring this fundraiser to fruition and see it be successful!
I’ve been on a mission since 2012 to run a marathon for and with the TS Alliance to raise funds and awareness for Tuberous Sclerosis Complex. Tuberous Sclerosis Complex is genetic disorder characterized by the growth of numerous noncancerous (benign) tumors in many parts of the body. These tumors can occur in the skin, brain, kidneys, and other organs, in some cases leading to significant health problems. As you probably know, I have three children affected by this condition and since kicking booze in 2012, have wanted to use my running ability as a vehicle of some sort to contribute to the cause.
I reached out to the illustrious, late Dee Triemer at TS Alliance in 2012 to see if they were an official charity for the Boston Marathon. Selfishly, I wanted to jump into the Boston Marathon without having to qualify, as those on fundraising teams do not have to meet race qualifying standards in another marathon prior to gaining admittance to Boston. Dee, of course, got right back to me after doing some research and explained that the application process to become a charity had officially closed for the year.
I stowed the idea and kept running, eventually qualifying for Boston as an individual and running in 2016. I managed my own fundraiser, focused on the same idea, raising funds and awareness. It was a success and I was somewhat content with my efforts. Somewhat content. Runners are essentially maniacs and soon enough, I was hankering for more. So flash ahead to early 2017. I was reading my TS Alliance magazine, Perspectives, and saw a blurb recruiting runners for upcoming NYC Marathon! The first official Team TSC! My initial reaction was one of frustration. Why hadn’t I known about this until now? Complete ego trip. Now the TS Alliance was officially doing marathons and I wanted to be a part, dammit! While the timing was bad to get involved in that cause, I did not give up on wanting to be a part.
I had this foreshadowing that I would be running in the Marine Corp Marathon at some point in the near future. My little brother, Col. Jason Woodworth, and his family, will be moving to DC in July and my oldest son Woody, and his wife Chelsey (both runners) also live in DC, so there’s that. Anyway, following my intuition, divine guidance or just wanting to see my family in October 2018, I emailed April Cooper, Director of Community Outreach Programs at TS Alliance, and lo and behold, we exchanged emails on the eve of the deadline for charities to apply for groups of entries in the upcoming 2018 race! However, the smallest number of spots we could apply for was 50. That meant we would have to get 50 people signed up to run for Team TSC and commit to fundraising a certain minimum dollar amount. Which I”ll tell you now, is a very reasonable $1000 bucks per entry.
I thought, of course “no probs! we can do that easily”, and I told April that I was completely confident we could get that many people to run for Team TSC. She had her own connections to this race to motivate her to take the plunge, and we got the 50 spots to fill! Yayyy!! Then, Oh Wow!! and 50!! Oh Boy!!
Let’s just say I was jubilant to be a part of this new project and was ready to throw every ounce of energy I could spare to help pull this thing off. Boy was I naive. Since then, I’ve learned what a huge effort behind the scenes this was going to involve, and at a volunteer level. It was going to require more time and energy than I really had to spare, but as I’ve said, this is a calling. I was down with it.
What’s become apparent to me as we are going full steam ahead now, actively recruiting runners to run for our cause, is what a big ASK this really is and how far out of my comfort zone I was going to be catapulted.. And maybe that’s the lesson, for me. I’ve been reaching out to ask for help from just about every corner of the many chapters of my life in trying to help get TeamTSC off the ground. If you knew me when, or know me now, and I haven’t contacted you, watch out. It’s coming.
As a part of our family’s journey with TSC and the multitudes of challenges these kids have faced, I let go of many of my old connections. The cyclone of trauma and tragedy we all experienced in managing the manifestations of this condition for years and trying to survive had taken its toll on me personally and connections have fallen by the wayside in the process. It has been so bleak at times, that all that seemed to matter, was what was relevant to survival in the immediate day. I’m happy to report that things have slowly gotten more stable, manageable and brighter, yet still, I resisted reconnecting with many past supports.
I will add this for other TSC Moms, caregivers, anyone affected by a diagnosis such as TSC. There’s already an inherent level of vulnerability felt when one has to continually ask for help seemingly daily, in finding and securing the services and supports necessary in the management of this condition. It can leave a caregiver feeling emotionally exhausted, marginalized and without a shred of interest in making any connections except with those in one’s immediate circle of supports. Financially, it can be unbearably stressful as it can be almost impossible to work outside the home, due to the sheer volume of necessary and often emergent appointments alone, not to mention medication management, IEP and ISP planning, and meeting, etc, I could list pages. It leaves one bereft, winded, beat, shut down, cut off and isolated.
Enter Team TSC. Regardless of prior mentioned inhibitors, I have forced myself out of my comfort zone, almost daily, to reconnect with old connections, to put aside my own insecurities and vulnerabilities and push forward. Just as so many of us must, as TSC parents. I’ve started going to fun runs at a local sneaker store, I’m training with old competitors and starting to get involved in some local running groups, I must have emailed the team with whom I am working at the TS alliance shamelessly, daily often, with ideas and suggestions. I’ve peppered some of my closest friends, not to mention my partner and kids, with long-winded conversations regarding my mission and I’ve gotten my son Jack, running daily which is a huge accomplishment for him.
Team TSC local!
So, friends, family, connections, readers far and wide, I’m here to thank you for already being a part of Team TSC because in so many ways, you are. What I’m going to ask is that you spread the word about this incredible fundraiser that has the potential to blast open the doors on not only fundraising but awareness and connections around the country! That is my vision for Team TSC.
If you are a runner, or were a runner, go to a gym or fitness club where there might be runners, consider posting our flyer and talking up this opportunity! We already have 10 people, at last count, signed up to run but we want FIFTY. Fifty is nifty! We have a phenomenal Team at TS Alliance and my fellow Team Ambassador, Ryan Novotny, brings his legions of marathon racing and training as well as military experience to us to keep us on course! A big team, sharing our stories and supporting each other as we train and fundraise for this grueling event, which could be the best, most broadening, out of your comfort zone experience you might ever have. And come on,if you’re involved or impacted by TSC already, you already are familiar with the out of the comfort zone feeling, so why not go one step further and help us out!!
Ambassador Ryan Novotny
Ambassador Jill Woodworth
Thanks for reading and here’s where to go for more info:
I got my 30 year college reunion magnet along with a written invitation in the mail recently, thank you very much! I slapped that beautiful magnet covered with a fall array of colors right up on my fridge, almost without even thinking about it. Every time I get something from Wheaton College, my alma mater, aka, you guys….I get a bit of a low level angst and irritability, peppered with stabs of conscience. While I have been brushing these feelings aside over the years, and the weight of judgement and failure that can come with, I cannot seem to keep it under wraps one more minute. I hardly feel a Wheatie! More, a “fallen” or better yet, “falling” Wheatie. Your religious mission, “For Christ and his Kingdom” has been a life long thorn in my side.
I graduated from the good ole, blue and orange, described as the “ Harvard of evangelical schools”, having had a truly wonderful, life changing but also extremely limited and narrow college experience, I was bound and determined to stay on that high and narrow path of evangelical Christianity. Hell, I even got married while I was there. I tried and tried to follow the rules, as set out for me biblically, until I didn’t. Until I fell. Into divorce, twice, into the lovely charms of alcohol, and other forms of addiction, and well, all sorts of other segways off the beaten path, which have made this lifetime at times equal parts challenging beyond belief, but as well, delicious and worthwhile, in the wisdom gained from many falls and many awakenings.
I so dearly want to join the bitter and disheartened bunch of us that couldn’t stay on that narrow tightrope. We who have fallen or are falling, who strayed from your course, at times resort to bitter backhanded discourse about how ridiculous you Wheaties are and how glad we are that “we” have evolved as humans to understand that there is more to faith then these continual reprisals of fear based reactionary events. But. I can’t. Because what I’ve learned in my falling down life, is there is no “us” and “them”, there is no difference between us at all, despite our past clutching to the cause, Christian, non Christian, Buddhist, Hindi, really any set of religious beliefs. There is just clinging to belief and then there is faith. Faith in the unknown, in uncertainty, in the willingness to admit we just don’t know for sure and that is A O.K. Faith in the power of love, I pray, daily, minute by minute some days.
The college needs to know that the rest of us that don’t show up at the reunions and who may on occasion, slam Wheaton on social media, or elsewhere, and have somehow “fallen” into a life of which our dear old Wheaton establishment, would highly disapprove, are still alive!! We’restill getting the refrigerator magnets, and letters and such, that we often resent. We have much to offer!
As Jesus met the woman at the well, so must you, dear ole’ Wheaton, find a place for we “falling” Wheaties, who may in some way, embrace the path of Christianity, but do not see it as exclusive, but inclusive of a greater whole. We who have accepted heaven in the here and now, born again in each moment of choosing love over fear as the portal to a life with abundance now and ever after. We who are falling and don’t care to get up. It is your mission to find a place for us too, not because we need to come back, but because you need to come back and make room in your hearts as equals, sharers in the keys to the kingdom. We are here too. Humans.
I hope the reunion goes smoothly. In love and faith,
I had to go in my daughter’s room today. I found myself on my knees in tears. She is 22. She is moving out soon to shared living. It is a really great opportunity for her in what’s turned out to by quite a serendipitous match. It is still so hard to let go. Walking into her room, I see the evidence of a 22 year old woman in about a 13 year old girl’s mind with schisms of brilliance, intertwined with many tiring days of multiple interruptions and continual mind grinding frustration on both our parts at our mutual lack of ability to make anything stick within a reasonable time frame, so she can forge her way more independently.
It’s been tough to stay hopeful. It’s not her fault. And maybe that’s just our history, our history influencing my vision of her. My ex mother in law did say it would be a tough go. That was when she was about 11 months. My father, who was losing his mind at the time, even saw it, that she wouldn’t listen to me. At all. As her mother and truest believer in my daughter, I still believe. She’s been my raison d’etre and now I am handing her over, just like it almost never happened and they’re starting at square one with her. The shared living match. I’ve come to accept that she is who she is as much as she is carved from my heart of hearts, she has also been tough to care for, and I’m telling you, this past year of working with her on following rules, has been a humdinger.
But I digress. I had to go into her room to look for hazards, a frequent part of a routine started because of multiple incidents of burns from curling irons, nail polish catastrophes. Fairly recently, we were in her room and discovered that she’d taken some stimulants that are prescribed for her brother. It scared me a bit. She had never done anything that deliberate and that extreme. I came to understand, that it was mostly just so she could stay up late at night. It triggered memories of my past addict proclivities, and was a somewhat horrifying review of my own past behavior, and all it’s inherent harms and damages. Ouch.
She loves to stay up late at night, and party. Plain and simple. She gives her all every day and by about 8pm she is done. D.O.N.E. But, she also likes to be alone in her room and do the kinds of things she enjoys and which comfort her. This may involve high pitched squealing, singing, rocking, making videos, taking pictures, printing things on printer, if possible, maybe even cooking and showering. Boundary less. I don’t know. Anyway, she wanted more. More time to have her own kind of fun, so she grabbed the pills
The pill escapade actually turned out to be a good thing because it got her on the escalated radar of the DDS and shared living seems to be the path. While initially quite reticent, I have come to see that it might work. It’s a letting go on many different levels and I am happy for her and I hope for the best. She has come so far from that little girl who had to spend 3 hrs a day, as a 3 year old in ABA therapy. She was locked in a chair, working with a therapist extraordinaire, that cracked her code and had her conceding to finally use the English language. By then, she’d already made up her own language that involved over 100 words combined with the point and pull method of communication.
Her TSC diagnosis was the linchpin for the entire breakdown and recovery of our family’s hopes and dreams, shattered and repaired repeatedly. I am grateful for all the lessons of tough love TSC has taught, painful, unfair, ugly as hell. We could not have survived had we not found new lenses daily, to see the gifts of this ongoing daily struggle dealing with what this disease represents and reflects so poignantly. That with which our own country and the world at large is faced.
We must not turn away, even on the darkest days, when everything seems black. We must sit in our anger, pain and discomfort for long enough to understand that we have the power, even if only to scream ”help” at the top of our lungs, fall to our knees in despair and confusion, and accept that this too shall pass, light will come. And it has.
So off she goes, with much fear and trepidation, I surrender her to the path, whatever path that may be for her. We have tried our best as mother and daughter, as mother and daughter’s do, and a deep love will always connect us. As tears stream down my face, and I think of how quiet it will be when she leaves, I know the time has come. Onward sweet Mary Ellen, it’s your turn! Go live. I love you.