Infantile Spasm Miracles

“Infantile spasms (IS) is an age-specific seizure type that occurs in 1 out of 2,000 children from many different causes. Tuberous sclerosis complex (also called TSC) is a common cause of infantile spasms, with IS affecting about one third of children with TSC.  The infantile spasms are most often seen in children between four and six months of age, although these seizures can begin anytime in the first two years. Rarely they are seen in older children up to age 10; at this age, the seizures are called juvenile spasms.

Infantile spasms are often mistaken for other conditions. Yet, prompt diagnosis and appropriate treatment of infantile spasms are critical, because children may stop developing normally or even lose skills soon after the spasms begin. Significant intellectual disabilities may also be seen if the seizures are left untreated. Swift and effective treatment may provide the best developmental outcomes possible for a child with infantile spasms and for children who also have TSC. “

Watching and waiting. Day by day.  Watching their eyes and wondering if it was going to start happening, wondering when it might happen, a mother’s intuition on steroids, call it.  It’s existing on a different plane of reality for some time, one where all that matters is making sure  you catch the subtle eye movements, the mild body movements and are prepared to immediately call the neurologist.

The first time we noticed it, we had no idea what was going on, only that something wasn’t quite right.  Her eyes were pools of water and they kept kind of rolling upwards in her head.  Her arms and legs would kind of lose muscle tension and collapse a little, as if she we’re bowing to her knees.  All I can say is it was weird and a bit terrifying.  We were ready to film these spells, and had an appointment with the neurologist when a regular old seizure landed her in the ER and the TSC diagnosis was made. It took awhile before we discovered what these other odd eye and body movements were and it was clear from the look on the neurologists face, after an EEG, that the news wasn’t good. As in very bad. Prognosis for future?  Cloudy with a likelihood of big trouble.

I was then working at pharmaceutical research as office manager.  The company I worked for hired research associates, who where generally young college kids, to do some of the heavy lifting of the sort of research needed for their studies. So when it was learned of the struggles we were having with our infant daughter, those research associates went to work tracking down information on this particular type of seizure and any available treatments. Turns out, one of the research associates was from Turkey and her father owned the company that manufactured Sabril, also known as vigabatrin, generically.  This, at the time, was about only possible treatment that had any long term potential to stop these life limiting seizures.  Shortly thereafter, I came into the office to find multiple boxes of Sabril, on my desk.  For free. God’s hand, fate?  Well grace anyway…. this was 1996.  The FDA had not approved use of Sabril (vigabatrin) in the United States. A side effect of narrowing of the retinal field of vision had kept it restricted.

Our neurologist at the time, when informed of our acquisition of the Sabril, did a happy dance around the office.  No lie.  He was so excited.  He knew about vigabatrin but as it was not FDA approved and he had no clue how to get it, he hadn’t mentioned.  He was more than willing to advise me on how to administer.   Within a week of starting the medication, Mary Ellen’s Infantile Spasms stopped and never returned!  Miraculous!  I am reflecting on this particular series of fortuitous events more than ever lately as I stand at a place of frustration with the multiple meds my kids have to take now for aspects of their TSC.  So remembering helps.  And remembering holds the hand of being overwhelmed with the infusion of grace that touched our lives and paved the way for the quality of life all three with TSC have now.

I was able to identify the start of IS in my other two children with TSC, probably within hours of the visible signs starting.  I had been perched waiting, watching, with eagle eyes since their birth.  Knowing of this potentially loaded gun of Infantile Spasms, was probably around any corner… and I was ready, phone in hand, to call the neurologist.  It happened with both Sara and Jack and by now, we were able to get the medication from Canada and twice again, the Infantile Spasms were stopped.  Ahhhh, the miracles of modern medicine.

Now here were are in 2016 and the FDA approved the use of Vigabatrin for the treatment of IS  in 2009, in no small part, due to tireless advocacy in good part from the TSC community.  It’s hope in a big old bucket and over an over I am grateful to have been on the receiving end of such a fortuitous miracle!

Posted in #IAMTSC, #ISAW2016, autism spectrum disorder, cannabis, epilepsy, Infantile Spasms, medical conditions, parenting, special needs, tuberous sclerosis complex | 1 Comment

My son Jack was concerned recently that he had acquired Tetanus. Lockjaw.  He locked down on this notion and obsessed about it to the point of not being able to eat or sleep, was having trouble functioning at school and struggling to do anything besides sit in his room and worry, worry, worry about the non chance that he had Tetanus.  He trudged to the school nurse three times yesterday concerned that different parts of his body were manifesting symptoms of Tetanus.  He came home and whipped his shoes off and threw them on the floor because they were bothering his feet in such a way that the blister created by them meant he might have Tetanus.  There was no listening to fact or reason. We tried.  His teacher tried.  It seemed almost the more we tried to explain and elaborate on the cold hard facts, those being that he had not done anything to put him at risk for Tetanus and nonetheless had a Tetanus shot in 2013, the worse he got.  He was knocking on the door of my room periodically to ask if he had Tetanus and I had to repeatedly, calmly reassure the poor kid, that he did, in fact, not, have Tetanus.  It was equally hilarious and sad.  I had to bite my tongue at times not to giggle, yet one look in his haunted eyes was quite enough to bring me back to full on compassion.

I was honestly stumped.  I’ve been dealing with docs and meds and multiple issues related to childrearing kids with TSC for quite some time and it had been a long time since i was completely stumped.  As in, I didn’t know which course of action to take, which doctor to call, what to say to his therapist, etc.  So, I contacted them all and explained it all to all of them, and risk being thought of as Jack Lacy’s ranting mom.  I got answers.  Pretty quickly. And in time I was able to piece together what might be going on for Jack.

He’d had a seizure, out of the blue, a few weeks back.  He came out of it easily and we were able to backtrack and figure out the probable cause and come up with a treatment plan, which was, to increase his seizure meds.  However, despite the cheery treatment plan and increased med,  it still freaked Jack out.  For good reason.  Poor kid is going along with his morning, at his dad’s, excited about going to Boston with his cousins who he rarely sees, and next thing he knows, he’s coming to on the floor and waiting for the ambulance. Scary stuff for a 15 year old.  Especially in light of his recent progress therapeutically.

Jack has grown over the course of the last year from having exceptionally intense anger outbursts that landed him in a Community Based Acute Treatment Program twice, to being able to face his inner turmoil and come to a pretty good understanding of himself and others.  No small feat for anyone, let alone a kid with some exceptional challenges.  This psychosocial growth has also stimulated more inner awareness, which was coming full circle.  He kept asking me post seizure, if he was going to die.  Now that’s a tough question to explain to a kid.  Well, heck, sometimes to anyone, including myself.  Simple is best with Jack, and so I told him that no, he was not going to die any time soon. Period. Getting that to stick was work enough, and in hindsight, I am not sure it really did.

The other thing that happened recently, post seizure, was that he visited his docs in Boston and they added two new medications.  These are meds that he needs for the manifestations of his TSC so while I was grateful they have these meds, I was a bit chagrined as well, at throwing two new meds into the lovely cocktail of pills he must take daily.  Moving forward with these new treatments, Jack seemed to tolerate the change in meds well initially, but thinking back, I bet they made his body feel weird and it once again reminded him of his own mortality.  When his sister and father casually made the comment that they hoped everyone was up to date on their Tetanus shots after some jokes about a rusty pitchfork, Jack stored that little nugget about Tetanus away in the back of his head for the culmination of this perfect storm of events that sent him spiraling downward into complete fear land.  He called it Tetanus.

I’m happy to report that at this writing, he seems to be climbing out of the rabbit hole of Tetanus fear to the point where he might be glimpsing some light at the top.  This morning, he was joking about his shoes not fitting right, and we laughed about his crampy sneaks, and went to get his older ones at his dad’s.  He walked into school with a lighter gait than I’d seen in recent days. His teacher and I checked in, and she said she’d felt the shift as well.  And of course, his therapist, who has been an incredible piece of Jack’s stabilization, reminded me that Jack also was quite anxious last spring when he had to take antibiotics for strep throat, and he’d come through that.  I’d forgotten, as often am rolling day by day with these challenges. This time, however, I’m writing it all down so the next time we are faced with a potential outbreak of Tetanus, I’ll remember to have faith, it’s just a pretty strong wave in the ocean of life.

I’ve been forced to reflect over the last few days on what a perfect example of fear this whole ordeal with the Tetanus represents.  It’s irrational fear.  He went down a deep rabbit hole and was having a hard time climbing out enough to see the light of day.  This seems to almost be our work as a country right now on so many different levels.  We’re all facing a bit more fear as a nation than we might have anticipated.  We’ve been warned, there’s history after all.  But still, we have to learn it on our own.  I won’t go down any sort of rabbit hole on that notion, but will end this little reflection with the message of hope. Hope that we can all learn from Jack and his riding the Tetanus wave of fear. It didn’t drag him completely under, and sometimes we all need a little shot of Tetanus to come to see the light.

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Trumped!!

trumpedI glimpsed her red trump hat as I turned the corner to go out onto the main road.  She was dressed in shades and patterns of red, swinging her arms and walking in rhythm to her music, a constant companion.  The landlord’s dog Harry, a sinewy standard poodle, curly haired ball of energetic love, was walking peacefully beside her.  I called her name but of course she couldn’t hear me as she listens to her music at what could be called deafening sound levels.  In my guess, an effort to tune out the world and set a boundary for her own safe place within.

Harry, said dog, turned at my voice and then she did as well.  I caught her eye mid wave, a pure place, I hesitated for a brief second, as did she, before we both went our own separate ways,within our own separate worlds….two souls on a journey.  In the act of loving her and all that is involved in her life situation, from my place deep in my own life situation, I sensed the wisdom of the ages.  The mother daughter push and pull into the void that I was in the middle of navigating with my own mother. Lord let me not lose myself applying this label and that label and remember who we both are in this precious lifetime. .

My daughter, is a trump loving republican and loves all things his campaign represents.  She’s gone through many obsessions over the years as her incarnation has had it’s challenges and with some setbacks from the get go,so  she’s had her work cut out for her.  There’s been many autism spectrum typical narrow focused interests over the years, but this one has seemed to be the most extreme and fly in as direct opposition to my own interests and beliefs as well as what I had hoped I might be teaching her.

Go figure.  It has been tough not to recoil in horror as she espouses the complete trump party line, has tuned in to certain conservative radio talk shows and has educated herself on the ins and outs of the campaign and politics in general.  We have a moratorium on discussion of politics within the house and there is more than one time where she has schooled me on the rules when I want to take on these beliefs.

It’s humorous.  I know.  Here I am with this liberal, Ram Dass listening, free spirited, old hippie-ish kinda mojo and she comes along raising her red rebel donald trump flag, right in my face. But it’s so funny because it’s not who she is.  Anyone who knows my daughter, knows this.  She’s an unselfish, caring and intensely strong person who just is defining her boundaries through the guise of a political ideology.

There is such a life force within her that despite her beliefs being aligned with what I see through my own matrix, as ghastly and terrifying, she sees freedom. “ People gonna judge”, no matter what and I like it that she’s taught us all a bit of a lesson about playing the game of life.  If there’s moves in this game of life, who knows, she may be one move ahead, lapping us without even knowing it.  Mark my words though, there’s no keeping this young lady down and while she may need some assistance with logistics, she’s going to fly and for that, I can thank the trump campaign for the transformational backdrop for some serious life lessons.

Maybe we all are a bit trumped by this whole political machine in motion this election and this whole thing is a big wake up call for every one of us in this country, asking us to define what really matters to us as a country, what in the heck we are doing caught in this paradigm, and how could things ever get to this point?  I’d like to think so, and I’m listening. Once again, thanks Mary Ellen!

Posted in #IAMTSC, autism spectrum disorder, Buddhism, Eckhart Tolle, medical conditions, parenting, Ram Dass, recovery, tuberous sclerosis complex | Tagged , , , , , , , | 1 Comment

The Power of Ice Cream

freezer lockWe have this little issue with ice cream in our family.  It goes way back.  Way back in my ancestral tribe.  Maybe it’s something that goes way back for a lot of us, those first memories of eating ice cream, pure, unadulterated joy….until, of course, we became adults (or so we think) and we learned about calories and fat and all the fun sucking adult knowledge we are all way too heavily burdened with, and then it became more of a secret indulgence.  Whatever, I still say eating ice cream is a sincere act of loving one’s self, you can quote me on that. I’ve watched pretty much all the adults in my life, from my earliest memories which include now, acknowledge and continue their love affair with ice cream.

My dad was a supreme ice cream eater.  Coffee, was his hands down favorite, but mix it with any sort of chocolate product, as in “mud pie” ice cream, and he was surely blasted to a certain place in heaven followed by a long tumble to the nether regions of his digestive system, countered also by maybe a long run to balance it all out.  Hah.  Yes, his love ran that deep for all things “Yum”, but ice cream was a profound attachment.  My mother too!  However she is more of a butter pecan and mint chocolate chip girl, and entirely more sensible.  Thank God.   And so it has been passed down through the genetic code, infused into me at a molecular level, and into every single one of my kids, with a similar passion.

So, we almost always have ice cream in our freezer.  Until recently.  We all have been, in our family, in one way or another, making the transition from being identified with our challenges in this lifetime, to seeing them as such and not letting them define or dictate our inner sense of being.  This has meant lots of growth, both internally and externally for all of us. Jack, the one with the most challenging life situation, he took the fall the deepest, into a full blown ice cream attachment. He simply wanted more. Also,he was in the midst of inner turmoil, the likes of which no child his age should have to endure, but through which he continues to persevere. Persevere enough for me to be confident he will learn the tools, and can access his internal resources to battle the demons of the particular type to which seemed to swarm his mind.  Which, before I go too deep, is why I had to find a lock for the freezer..

We had been seriously going through some ice cream, and I’d tried all the tricks.  We discussed getting into the ice cream and consequences…as in health wise, budget wise, extrapolated out to quality of life, and beyond,  on his terms…but nothing was cracking the surface except for our continual loop of expectations not met, hope slashed….and it was all falling on Jack.  No matter what, he couldn’t stop.  We went long periods without any, (maybe 3 days) as well purchasing some expensive alternatives, such as individual ice cream treats from the convenience store.  I tried kinds of ice cream that he couldn’t possibly ever enjoy…more “mature” flavors such as pistachio almond and various intensities of frozen yogurt, fat free, sugar free, flavor free. Nothing was working.  He’d douse whatever was there with whatever toppings moved him at the time….chocolate syrup, sugar, cinnamon sugar, regular syrup,etc….. the pressure on both sides was too much.   We needed a middle path, a way thru.

We had to buy the freezer lock.  Amazon to the rescue.

It goes without saying, but I’m gonna say it… being able to buy ice cream again has been truly wonderful.  The first day we had the lock on the freezer, I felt a little sad for Jack.  He looked glum.  It wasn’t really his fault.  It wasn’t anyone’s fault. There were many contributing situations all pointing to the freezer lock being the best solution for the time being.

I hope, in time, we won’t need the freezer lock.  Already, Jack seems content with the one serving of ice cream (which equates to about 4) he gets a night.  This is progress, and  I am down with just that.  We won’t always have to lock up ice cream but we kind of have had to learn to use external source to control for what eventually will be an internal job.  The trick is in allowing  the process to flow toward being done on an internal level, as it’s only then that we can  unite fully, with fellow ice cream lovers in mutual enjoyment of ice cream for everyone every day, or most days, for the rest of our moments here on this planet!!

Moving outward, maybe there should be a political party in our country that rallies behind those who love ice cream?  Ice Cream Lovers United…or something like that. Our platform would be simply our love of ice cream I think we all could get behind it and enjoy the support of each other, though maybe it would get divisive between the butter pecan lovers and the cherry vanilla lovers?   Sigh.  Who’s to say? :)

Well then, time to go.  It’s 12:31pm and it’s ice cream time somewhere, even though it’s not Friday either.

Posted in #IAMTSC, addiction, Buddhism, Eckhart Tolle, medical conditions, parenting, Ram Dass, recovery, Tara Brach, tuberous sclerosis complex | Leave a comment

Discourse on Madness

crazy1In my own personal reflections lately, I’ve often pondered just what it is about the label “recovering” alcoholic, that I find frustrating personally, as well as what it is about 12 step support groups, and the overall image of the recovery industry in general that irks me. And it’s not what I know is the behind the scenes reality of the treatment industry, but more that it seems to project a treatment mindset focused on too much of an extreme in expectations.  All or nothing, drunk or sober, using or clean….America loves the extreme. The extreme reflected in the fascination with things going wrong in the lives of the rich and famous, on a daily basis in social and news media, to use a pertinent example.  America also loves an underdog, so by labeling those who have fallen thru the cracks in society in the throes of some sort of an addiction, in such unholy ways as alcoholics or addicts identified with whichever 12 step program of recovery or through whichever doors of recovery they came, and asking them to permanently chain themselves to the identity of “alcoholic” or “addict”,  of which addicts are the greater whole, is a lot to ask.  Then to praise them as they rise from the ashes of their former lives so heartily and scorn their every fall or relapse, with equal zeal, is admirable and inspiring, yet a bit pedantic, and symptomatic.  The whole system seems rigged.

 

Why cannot those of us in society not labeled as any sort of “addict”, those of us who make less desperate choices on a daily basis, yet springing from a similar though less damaged unholy or unexamined inner landscape than the more destitute, full on, addict, reflect on what seems heroic and maybe even beyond our own capabilities as a whole?  All or nothing? C’mon now.

 

Consider social drinking.  Moderate social drinking might be considered somewhat of an attachment.  An attachment is not the worst thing in the world, yet like intention, the road to hell is paved with attachments.  It distracts.  It distracts from and yet contributes to, the modern human plight of constant thought and lack of any sort of being in the present moment.  A shiny happy place in the midst of the cloudy, rainy day…the outward pressures of modern day society to have more and be more and make more and do more all culminate in telling us we need these attachments to survive!   

 

Attachment to a new car, new house, new shoes, chocolate cake, Haagen Daaz…blah, blah, blah… yet even to the level of being overly attached to our own children. While maybe not as ravaging as drugs and alcohol, on the surface, but in reality, and while absolutely, the addict who claims to be “in recovery” is admirable, it is also a reflection of a society at large gone mad, and indicates that we all might in some area of our lives, be it even any sort of an intense attachment such as mentioned above, need to be considered to be “in recovery”, if we are even simply aware of these intense attachment issues. So can ya dig? It’s all of us. Not us and them.

 

What seems nutso to me, is that we have any measure of surprise as we stand by and watch global drama after drama unfold, as well as our own artisanal version of this global drama occur, right here in the United States, particularly in light of the recent shooting incident in Florida.  These continual reprisals of extreme violence and our news media’s rabid fascination with rooting out and displaying this stuff, like a trainwreck from which we cannot collectively look away, are merely another reflection of a society gone numb enough to miss the reality that any solution other than a complete inner makeover, via spiritual awakening, is necessary to fix or solve this problem of an insane world, is much like giving drunk a gun.

 

Humanity’s disconnect from our essential “being” is what I sense is the root cause of such acts of violence as demonstrated last week in Florida, as well as the fact that we have a man such as Donald Trump as candidate for President of the United States. The United States of America,  a country founded on the principles of a desire for inner freedom from the rules of the church, manifesting as a desire for outer freedom, via the Mayflower, as well as the driving force behind the founding father’s collective manifesto infused into the Declaration of Independance.  I guess that last thought right there might be a hint at the start of the ultimate conundrum.   

 

As a huge Ram Dass fan, I love one of his quips which goes as follows:   So God and Satan were walking down the street.  God points to a shiny object and says, “Look, I’ve found truth!”, and Satan replies, “Here give it to me, let me organize it.”  

 

How now brown cow, do we incorporate truth back into a society gone mad with a complete obsession with “organization” and no deeper connection to our being other than through what is considered rational thought.  We are a country with a broken mind and a complete spiritual disconnect, yet we are medicating it repeatedly with new and different pharmaceutical versions of the effect alcohol has on the mind of an alcoholic.  We are numb. We are not really fixing anything or healing our minds.  I dare say the proliferation of new and different psych meds in the era post prozac, is yet another example of what can be seen as a man made solution to a problem that cannot be cured at the level of a man made solution.  I’m not saying that psychiatric medication isn’t helpful, I know that when used correctly, it can be life saving.  I do not however, believe that without more of an integration between a holistic, heart centered perspective on life, spirituality, addiction and medicine, we as a human race, as well as our planet Earth, will survive.  

 

We can use this recent tragedy in Florida, as well as the potential tragedy of a Trump presidency, as a wake up call to dig deeper into the reality of who we are called to be as human beings. Not just human or just “being”, but both.  Right here, right now, on this planet.  A planet that may finally be able to view some of these recent tragedies, while entirely horrific, as a crack in our  compartmentalized society, a broken jar, a ray of sunshine into the prison cell.

 

So now finally, we are starting to look outside these compartmentalized boxes, for more integrated solutions to whole body healing, such as what’s happening at least more recently with marijuana legalization and other holistic treatment methods, which encapsulate more of a mind/spirit/body effect, as a sign, an almost desperate sign, of an intense yearning for collective peace of mind, in society as a whole as well as within each of us, on a personal level.  

 

At least this is one human being’s spin,  cosmic giggle included.

 

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Posted in #IAMTSC, addiction, Buddhism, Eckhart Tolle, medical conditions, parenting, Ram Dass, recovery, Tara Brach, tuberous sclerosis complex, Uncategorized, Wheaton College | Leave a comment

The Path…infused with Artisanal by Dad

My father died of fronto-temporal dementia in September of 2004.  He was an exceptional human being in the way we all are exceptional human beings, however, he knew it.  He was a paratrooper in his early twenties and jumped out of a plane to find that his parachute wouldn’t open.  Being a master at improvisation, a skill handed down from a legacy of improvisers, he was able to ride down on the top of another’s open parachute, and then another, until he finally landed in free fall, 60 feet onto his head.  He was hospitalized and there was talk that he might not live.  He did survive the fall and despite his humanity was and is one of the most alive beings I’ve known.

Recently, I was given a box of old letters that was salvaged from the attic of my mother’s house. They were letters I received from friends and family as I attended college in the midwest.  Wheaton College, Wheaton Illinois.  The very place both my parents met and later went on to marry and start on their lives together.  So yesterday, I decided to start reading some of the letters from my dad and really get a better glimpse into who he was, who he is and who he will always be to me.

As I’ve shared some of my most personal reflections here in such a public arena, I’ve often wondered what compels me to do this and before I over ponder, I will share one of these letters my father wrote to me, this particular one from back in October of 1984, my freshman year of college, 1000+ miles from home, my first collegiate season of cross country, in a very fundamentally Christian conservative, yet intellectual environment.  We had to adhere to a strict set of moral biblical imperatives (aka “the pledge), however as college kids, we found ways to have fun. Thus the letter refers to “pranks”, acts which were silly, harmless (relatively) and infused what often seemed grim conservative intellectual (oxymoron?), with a certain lightness…as did my dad, in my life, and his letter, the words of which, ring like sunshine on the awareness of my being.

I am becoming free to live and engage in more conscious parenting of these children, those with TSC and those without, in the role of their mother, fellow human being and fellow path walkers in this human predicament in which we’ve all found ourselves, together. Through untangling the roots of the pain bodies (see Eckhart Tolle), that have been wreaking havoc in our lives, in such a way as to clear our inner landscape, we can all be more effective as a family, as humans being, right here, right now, in loving awareness.  It is my parents who set me on this path and never have I been more aware of this than I was yesterday, sitting in my car, in the Big Y parking lot, reading my dad’s letter, with tears of pure joy and awareness streaming down my face.  I only hope another out there on a similar path, as they all are ultimately the same path, might hear the message….and it goes as follows:

Dear Jill,

Did anyone ever tell you you were strange?  I am telling you the fact.  I just went through a box of pictures of which I have enclosed at least one (Do Not Destroy-PLEASE RETURN) of the aforementioned.  Of course, all the previously strange things you have done that didn’t get into the pictures are also remembered in this assessment.

Does the present prank-mobile suggest some of your strangeness surfacing?  Well, hang in there, it is all right I still love you, probably even more because being with, talking to, writing to, or written to makes you a very interesting person and contagious fun.  Thank you for not being in college with me.  Young Life leaders were under the pressure of Wheaton and sports and to vent the tension often did the strange type of things.

One of the most exciting things I realized in those years with all the learning and doing I never really understood what I just was comprehending.  That Christ came totally opposite of John (the Baptist) who was the austere, strict, according to the prophets and law and would probably fit in at Wheaton, but Christ came enjoying himself and others, eating and drinking and expressing life to its fullest.  The man who cared when no one else did, the man who cried when no one else would, the man who always did the unexpected, because of man’s inability to understand or appreciate life.

GOD BLESS you Jill.  Being is where it’s at so in all your doing, be sure to BE the person who cares amidst the fun.

Could you send your dates of remaining meets? Next letter!  Thanks.

Love and Kisses,

DAD

Posted in #IAMTSC, addiction, Buddhism, medical conditions, parenting, Ram Dass, Tara Brach, tuberous sclerosis complex, Uncategorized | Tagged , , | Leave a comment

Happy Mother’s Day, a bit early for once.

Dear Mom,

I love you.  I feel a deep wave of love come over me when I say that and it brings tears to my eyes.  I love you with every single cell of my body, mind and spirit. Even my ego has a stake in it.  It has been a meandering path for you but I look back at our lives and see every turn we took as a family was only meant to bring us closer to each other and closer to our pure inner essence of God.

I got really really lucky when the veil dropped upon my birth back then in November of 19xx.  I can talk about you and Dad and wax eloquent on all the richness and depth you both had as individuals, about the incredible experience of getting to know you both as your daughter, as the grandparents of my children, and as fellow human beings, but I’d rather tell you how grateful I am that it happened the way it did.  Little did we all know, we’ve been working on this incredible curriculum we called down to get us free and back home, back to the garden.

I’ve been sleep walking thru a lot of parts of my life, Mom.  I needed to live it this way, to go down those dark alleys that you feared, shake hands with my demons.  I needed to so I could be here now to understand that it was all ok, even though there was so much darkness.  You stood by me despite what I know were your own doubts that I would ever pull through the dark night of my soul. The failed marriages, the alcoholism and other addictions, giving up custody of my son, stumbling through years of parenting special needs children, half awake, barely conscious, calling down grace.   I hope you can come to some measure of peace in your soul and let go of anything that you think you might have done wrong or less than perfect which might have created more suffering for me.  It was all grace, it is all grace.

This is what you are:

a long walk in the woods on a day, any day, naturalist

whoever goes along, learns and grows

cloth napkins at dinner and all the food groups at every meal

up early to exercise and up late to do mending.  

alto in the church choir, bell ringer, just for fun

cross country skiing for hours at the first sticking snow  

head thrown back in full bodied laughter, every summer

on a porch or in a kitchen,

with your family my family, our family  

long car rides with word games and license plate spotting

museums where my brother and I would be waiting for hours for you to finish reading all the informative placards then making sure we didn’t miss anything on the car ride home

the one to talk about the “meaning” of the movie

the story in the song

coke classic stashed in the back of my refrigerator like it’s crack cocaine

piece of a pumpkin muffin hidden behind my toaster

care and concern and self sacrifice and light.  

the almost imperceivable wince at the tattoo

the tense mouth during the Simpsons shows you sat by and tolerated

the puritan work ethic that never let you rest.

Pied beauty.

Like daughter

Like mother

Now, all the lessons you taught me that I didn’t think stuck, all the many times I have been in the woods and remembered that I was supposed to be there for some reason but couldn’t quite remember why, all the places we went and things we saw and laughs we shared and books I read that you strongly encouraged…. you are all that too.

You and Dad were the most incredible bookends for a lost soul of a daughter who finally is waking up to knowing that everything I sought after was there the whole time, the groundwork laid with loving awareness, for minute upon minute, day upon day, year upon year.   I believe you would say that is how our heavenly father cares for us.  You are perfection in every moment and you have no clue.  You carved the keyhole and waited.  I found the keys and now we can be together here, and now with a glass of wine for you and seltzer for me, and laugh and love and know we are only just walking each other home, for the rest of our lives in these bodies, on this planet.

I love you Mom. Thanks for choosing me.  Happy Mother’s Day.
Jill

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Marathon Aftermath

marathon 1It’s been almost a week since I crossed the finish line of the Boston Marathon and besides suffering a bit from muscle soreness and pmld syndrome (post marathon let down), I’m doing well.  I received more praise than necessary and was told I provided inspiration for many.  I’ve reflected on this idea of inspiration quite a bit since then.

It’s funny how everyone looks at a marathoner as a hero, as representing something maybe they’d like to do or know they could never do, and it seems as if the marathoner is almost elevated to a lower form of a deity.  This feels weird and uncomfortable for me.  When my boyfriend picked me up in Hopkinton after the race, I got in the car and said to him, “now it doesn’t have to be all about me anymore, I’m glad it’s over, it was a once in a lifetime experience and I feel lucky to have had this experience but I’m tired of all the attention” to which he replied something along the lines of, “let it be about you for just a little longer…you worked hard and you went out and did it so accept the praise and then move on”.  I took this to heart.

I did run many many miles on the back roads and the rail trails of Rutland, Holden, and Paxton over the past year, through all kinds of weather, some formidable and some delicious.  It wasn’t a bad winter so I got a break there, though I know I would have gone to the gym if necessary to get the job done.  So yes, I put the miles in and was able to pull it all together on race day and have a great race.

Let me tell you a dirty little secret about probably a good percentage of marathoners …it is that we LOVE the long runs and just about all the training that goes into preparation.  It is glorious.  There were very few times when I had to motivate myself to get out the door. This may not be true across the board, but I’m betting it is more true than not.  I loved the feeling of running away from my kids, my responsibilities in life, my worries and problems.  It is a pause, the run, a time to reflect, to go deeper into my consciousness and heal.  So it has become a win-win for me as it represents a sort of therapy, all this running, but it is the ones on the sidelines that are waiting and watching and hoping to see their runner in the race, that make the real sacrifices when they love a marathon runner.

It is my kids waiting for me to come home every morning on the weekends, worrying about me on the runs I did in inclement weather, it is my mother worrying and praying for me that I will use good judgement in deciding how much to run and she who knows the energy I’m using to train could possibly be used better elsewhere in the future, but she smiles and supports me as she knows and accepts that being a runner, for better or worse, is just part of who I am.  It is all the doctors who patiently treated my stress fracture and a friend who gave me free massages.  It is the many who donated to my cause in this past marathon effort, that of raising money for TSC.  It is the toll this has taken on my body at age 49.  There is a bit of a self destructive quality I have that also can be seen as willpower in light of evidence that running 15 miles a day might not be the best idea for much longer.

So yoohoo all you out there cheering, it is you that are the true heroes.  Each marathoner in the race represents a full army of support and we runners are just showing up to represent and honor those who love us with our heroic act of seeming self sacrifice, yet secretly knowing that it is really a joy to run.  I have truly had the chance to meet God on my runs, in the trees, and brooks, the fields and farms I run past, there is a still presence that envelopes and fills me and always keeps me coming back, like a good addict.

The paradox of it all is that running a marathon is an act of much willpower yet it is on the run, that there is a chance to really surrender to what is in this world and in ourselves and find true inner freedom.  Yet even we runners, have to come down and do the laundry, the dishes, walk through the conflict and drama of our lives and try to remember that we are one among many and we can choose to feel special and exceptional for being able to perform such a feat of willpower, or we can seize the opportunity to let our runs be a wake up call, and walk (or run) the line between willpower and true freedom of the soul.  It is a daily thing, a daily battle for me, but taking a step back and bowing to the heroes in all of you, is my lesson from this marathon thing, I did.

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Homeward Bound via the Boston Marathon

life1I had to think outside the box to connect the dots but holy mackerel, it took a fellow game player, with a bat, to show me how to hit it out of the park and help me see the metaphor, my own metaphor and all of ours in life. You see, it’s not about me anymore because I’ve set myself free.  It’s about all of us together and all of you who reached out their hands to give donations in multitudes of ways along the path of life to help me be in the position where I am right now….that of asking for help.  Help for my children.

I’m every mother out there and have been all of you good and bad, and all the places in between at one point or another in my life.  The good mother in me appeals to the good mother in you as running this race on the 50th anniversary of women running the Boston Marathon, is symbolic of all I want to do for my kids, all we women ever want to do for our kids, we lay down our lives for them but in doing so, we save ourselves, by running, what running gives back in internal freedom and joy.

I got distracted with “me”, and I thought it was all I’d ever see, but it’s about them, my kids, all of our kids, and the future and coming home.  Coming home to hope and faith that there is a better future for them with better treatments, more doctors and more public awareness of this disease of Tuberous Sclerosis Complex.

In some small way, I feel that this fundraiser has symbolized my attempt to give back to everyone in my life that has believed in me and seen the good in me and in all of us who want free from these chains of life, represented by dis-ease. Living life with a  disease, as dis-ease in all forms, physical disease, mental disease, soul sickness that we all at some level, at some point in our lives have run from.

Running for TSC, for me, is like finally waking up and realizing that I’m running home, homeward bound, as all of us are in life following our own curriculums and hoping for relief, salvation, in all sorts of forms.  As Ram Dass says, “We’re all just walking each other home”.  So tomorrow, the symbolism is not lost on me, especially as a mother.  Mother of 5, three with TSC.

I am asking one more time for donations  Don’t see me, see my kids, the TSC community and outward to the special education community, the mental health community, the general overall community of human beings at large. All of us helping each other in our various methods of recovery, and waking up from the game of life to realize we’re all in this together, walking and/or running each other home.  #IAMTSC

To donate online, click on the link below:

https://www.crowdrise.com/jillsraisingmoneyfor/fundraiser/jillwoodworth
Thank you each and every one of you as “donations” come in all forms and there have been too many to name so God Bless you all!

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Booze at the Big Y

So I walked into my local Big Y grocery store, recently and was confronted with the new addition of alcohol to the store.  Much to my chagrin, the alcohol was not just in one place, but was literally scattered, in stealth, and not so stealth displays ALL OVER THE STORE!! What’s an alcoholic in recovery to do?  My immediate reaction was to want to drop kick a 30 pack of Bud across the store and run screaming into the parking lot to the safety of my car.  From there, I planned to stay hunkered down, writing an anonymous letter to the editor of The Landmark about the state of affairs at the Big y and how this was messin’ with all of us ex alkies.  I did not do this.  What I did do, was talk to my other friends on similar paths of recovery and make jokes about it.  I posted on facebook and ranted.  Mostly, I thought about it and why it still bothers me to some degree and what it represents and I wrote this blog.

For those of you that don’t have addiction issues with substances, stop reading this and get down on your knees and thank your lucky stars or whomever you thank out there for this sort of nature/nurture scenario that did not set you on the fast train to hell that can be that which is the life of an alcoholic bottoming out.  After doing this, stand up and keep reading.

Booze in Big Y bothers me personally because it still triggers these “FUN” receptors in my head, that will probably always be there, and I’ve had to seek different, more reasonable ways to satisfy them as I am not willing at this time, a day at a time, to take the risk that the call of booze represents to me.  Thing is, I kind of have to honor and thank alcohol for all the fun because there was a lots of it.  Oh hell yes!  It kept me numb during a period of my life when I probably wouldn’t have made it otherwise.  But, it also did other things which I’ve discussed ad nauseum in other blogs so you can reference those if you don’t know what happened to me at my own hand and how I’m one of those touched by grace, that found my way back.

So I say to myself, “I see you alcohol and thank you for soothing me and holding my hand when I needed you but unfortunately for you and fortunately for me, I do not need to hold your hand any longer.  The feelings and emotions you were masking have been revealed and they are not so scary anymore now that I know from whence they came.  Now I am movin’ on and despite the boozy Big y, I am not listening to your call”….

Addiction to substances, is such a hot button issue right now, and the awareness of the importance of dealing with these issues in society has been raised so much so that we probably all know someone who struggles.  Those of us claiming that we are in recovery from addiction to substances are merely the ones willing to put our hands up in the air and say, “alcoholic”, much along the lines of saying “human being”.  Addiction is just amplified attachment to something, and it comes in all forms. I’ll go out on a limb here and say that most in our society are probably addicted to something, someone or some ideal to which we are a slave in serving….the slave in our head that tells us unless we get a “hit” of whatever it is we think we need, we are not enough.

Those who struggle with the idea that addiction to substances is purely a weakness, humor me, if you will.  We human beings are all in.recovery from the game of life.  Recovery from the life that we think we are supposed to have, the one that we see on TV, in movies, media in general.  We are bombarded constantly with messages of a life of physical and emotional perfection that in reality doesn’t’ exist, so we are constantly in a state of thinking we’re” less than” in some ways…it’s almost impossible in this day and age to tune all of this out and there is some really great stuff that goes with the new age of media too, so there’s that on top of everything else.

Alas, the solution for me isn’t avoiding Big Y, because that would be foolish.  I like Big Y for lots of reasons and I don’t have the time or energy, both valuable resources, to shlep to another grocery store all the time.  Plus, eventually, they’ll probably all have booze anyway.  It’s just an adjustment period right now, as I come to accept this new lesson in the classroom of life, and walk through the store, past all the new sorts of shiny bottles and packaging that are fascinating and present the query in my head of, “I wonder what that tastes like? …that wasn’t’ around when I was drinking”….that takes some negotiating to mute.

I also don’t want to go the other route and cling too much to a sense of self righteousness as a recovering alcoholic because I overcame this addiction, I am somehow better than the average Joe who never has had to overcome anything.  That is just arrogant and ridiculous as every single one of us has a story and every single one of us has some internal battle on some level to which we can say,  “I can relate….yo!…. you who…..human being, remember?”.

Mostly, I’ll just grin a bit as I remember who I thought I had to be when I was drinking and cruise on down the aisle of Big Y and of life, with a sly smile, and the knowledge that it’s just life after all and I’m just damn glad I’m still here to be a part of it.

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