True grit motherhood.

I read a fascinating article recently titled, “A War Well Lost Sam Harris and Johann Hari discuss the “war on drugs”.”(samharris.org 4/7/15) It is a riveting, however lengthy article and prompted me to weigh in on this topic in my blog. Additionally, local NPR is airing stories on the opiate problem in Massachusetts and what is being done right here in our own state to address this issue. I am motivated to blog about this subject as I have direct personal experience as an addict/alcoholic, almost 3 years into recovery.

We have a problem in this country and it is my feeling that our models for addiction treatment in this area are inadequate and often don’t address the core issues that those caught in the throes of this awful scourge, much face. Some of the misinterpretation of addicts and alcoholics stems from past history of the “war on drugs” combined with a model of addiction as more of a personal failure and requiring much more personal responsibility than of many can muster to face and deal with the issues at the core of why addiction was chosen as a mode of coping. We addicts (I am including alcoholics under the umbrella of addicts from here on), don’t wake up one day and say to ourselves, “hey, I feel like screwing up my own life and the life of those around me and risk spending the rest of my life in a personal hell of which might be included being arrested, sent to jail and/or instituted or dying”.  It’s not that simple. While for me, I had the support of family and friends and financial resources to get a foothold in recovery and continue on a journey of self discovery and personal responsibility via the 12 step program, many are not so fortunate.

Here in the United States, addiction is seen as more of a moral problem and not a health problem. This creates issues from the start. Countries such as Portugal have decriminalized possession of anything less than a 10 day supply of every substance from marijuana to heroin. If a person is found in the possession of less than a 10-day supply of anything from marijuana to heroin, he or she is sent to a three-person Commission for the Dissuasion of Drug Addiction, made up of a lawyer, a doctor and a social worker. The commission recommends treatment or a minor fine; otherwise, the person is sent away with no penalty, the majority of the time. The money spent on arresting and prosecuting addicts is poured into other social support systems such as recovery programs involving employment opportunities and loans to get the addict back on their feet. The end result is a huge fall in drug induced deaths, lifetime, yearly and monthly prevalence of drug use.(mic.com, Zeeshan Allen, 2/11/15)

Environment is a factor.  I’m sure most remember hearing about a study that was described a while back where they put a rat in a cage where it had nothing to do but choose between drugged water and plain water.  We all know what happened. So Bruce Alexander, in the 1970s, tried the same study a bit differently. He built a very different cage and called it “Rat Park”, where they had everything a rat could possibly want. And they had both the water bottles, drugged water and otherwise. They hardly ever drank the drugged water, and if so, not in a way that looked compulsive. (samharris.org 4/7/15) There’s this component to explaining why our war on drugs model for drug users in this country fails, as addict returns to “rat cage”, not “rat park”. Released from rehab to go back to the same circumstances and lifestyle that fueled the addiction in the first place, with few tools or viable resources to improve their environment. The post rehab admonishment of “go to meetings”, is often too slow and tedious a process to handle, the addict is set up to fail once again.

Our view of addicts as human beings, not derelict criminals, despite active addiction, has to change.  There’s a story about a group of heroin addicts in Vancouver, British Columbia, who had a leader that stalked the then conservative, right wing mayor, Phillip Owen, for two years until the mayor went incognito to meet with addicts. He was totally blown away. He ended up opening the first safe injecting room in North America in 70 years and 10 years later, death by overdose was down 80%.(samharris.org 4/7/15) This story illustrates compassionate drug policy and the results shown by treating addicts as human beings. We fall short in this country, repeatedly and thus is seems despite all our focus on rehab and recovery, addicts continue to seep up through the cracks in society and end up filling our prisons and institutions where few seem to be looking at why they became addicts in the first place and what we can do to help them.  In the meantime, keeping them alive and educated is a huge first step.

Mental health is an enormous issue for addicts. Many addicts deal with underlying mental health issues precipitating and perpetuating addiction.  Mental health calls for a psycho-therapeutic aspect of addiction treatment. Psychotherapy as well as 12 step groups help.  What I love about the 12 step program is the chance to look at one’s life history through the process of acknowledgment, accounting for harm done and making amends. This undertaking is excruciating at times, but one comes away with a deeper understanding of what drove them to addiction in the first place and how they can begin to forge a conscious path to a new way of living. In my opinion, the 12 steps should be taught in schools as a model for honest living. However, it takes much time, time that many cannot tolerate and despite their well meaning efforts to start on this journey, the urges to use or drink again is too much to ignore.

From a standpoint of possibly shortening the phase of self discovery, come several other alternative treatments are proving successful in clinical trials. MDMA assisted psychotherapy is one of them. I’m not talking about dropping some ecstasy and coming to a place where one is free from addiction. This involves trained therapist-assisted, monitored MDMA sessions requiring patients to meet certain protocols for entry into the studies and follow up support with therapy and re-immersion to a life of support via community programs such as 12 step. The key is that the MDMA as a psychoactive substance, brings to one’s awareness of key emotions and feelings that one is often unable to access at baseline.

As well, another psychoactive substance, ibogaine, shows much promise.  Ibogaine is derived from the root of an African plant. “Studies suggest that ibogaine has considerable potential in the treatment of addiction to heroin, cocaine, crack cocaine, methadone, and alcohol. There is also indication that it may be useful in treating tobacco dependence.  A single administration of ibogaine typically has three effects useful in the treatment of drug dependence. Firstly, it causes a massive reduction in the symptoms of drug withdrawal, allowing relatively painless detoxification. Secondly, there is a marked lowering in the desire to use drugs for a period of time after taking ibogaine, typically between one week and several months. This has been confirmed by scientific studies. Finally, the drug’s psychoactive nature is reported to help many users understand and resolve the issues behind their addictive behaviour” (http://www.ibogaine.co.uk/)

So any sort of focus on the “war on drugs” makes my skin crawl. My personal experience and continual research leads me to conclude that much is lacking in this country in terms of adequate support for recovery and reentry into a meaningful productive life in which the recovering addict has a chance other than being caught in the continual cycle of addiction.  There are alternative solutions and the raising awareness that our traditional solutions are not working, is encouraging.  However, our underlying, long standing views of addiction must be addressed and the addict given lucrative psychological and environmental supports and tools to gain a leg up as a contributing member of society before any sort of progress can be made.

This is not to diminish in any way, those currently employed in the recovery field on the front lines and behind the scenes, as I have found, again from personal experience, much compassion and personal support. True heroes. It is discouraging that few make it, and statistics are grim for relapse, as many as 50 to 90% of those recovering eventually relapse.

As I continue on my own path in recovery, I am grateful for all those who believed in me, supported me both financially and otherwise, and guided me to many fantastic resources which have all aided me in my ongoing awareness of my own potential for raising human consciousness through the channels of addiction recovery.  That I am able to sit here with the presence of mind to have an opinion and a voice to write this blog, speaks volumes to the fact that hope springs eternal.

While going through photos recently to find some baby photos for end of school yearbooks, (a 5th grade yearbook? I’ll let let you guess my thoughts on this one), I happened upon the picture posted with this blog, of myself and my five kids. We were on a day trip to Boston, I think we were in a T station. I found myself fixated on the picture, trying to see just who that frazzled woman was with the five young children? I can honestly say I don’t remember a lot of their childhood, so am glad to have the pictures. I was overwhelmed, to say the least, with their care. Three of them with Tuberous Sclerosis Complex (google it), were in some sort of medical crisis which seemed to ensue almost bi weekly. These medical crises were serious, as in ER ambulance, seizure sort of crises, as well, included many specialist visits and frequent hospitalizations. My oldest son, of whom I did not have custody, was living across the country with my first husband, and only visiting over the summer. My youngest, a typical child, was the final act, the clean up crew, and my little cling-on, barely a year old in this pic. Thus, it was rare that we were all together like this in such “fun” circumstances.

I thought I was keeping it all together, I wasn’t drinking heavily at the time, that was to follow, but I was attempting to maintain an appearance of being in control and on my game. The picture tells the story. I look frazzled, exhausted and goofy..as we mom’s tend to often look, but I was not in any way pulling off the “in control” thing, as much as I thought I was. The cost of these years was great, but not unsalvageable. The 3 kids with TSC’s precarious medical state has stabilized over the last few years or so, though it will always be present . My oldest is married, in China teaching and my youngest is thriving in her role of, well, youngest.

Much has transpired in our lives since that day, yet it has taken me until quite recently to really deeply grok the lessons I was learning at my own hand and that of the cycle of life. We are all the culmination of our genetic code as well as our life experiences all handed down age after age, back to the days when we were part of the stars….to quote Carl Sagan, “We are a way for the universe to know itself. Some part of our being knows this is where we came from. We long to return. And we can, because the cosmos is also within us. We’re made of star stuff.” Additionally, recent studies in the field of epigenetics sheds some fascinating light on the possibility that humans have inherited generations of fears and experiences, not only hard DNA coding. To me, this smacks of a crossroads between science and spirituality. Impermanence with meaning.

Recently, I was able to watch the Boston Marathon live, from the streets of Natick. What a fantastic experience, all around. However, what I wasn’t prepared for and what I most valued from the experience was seeing the wheelchair racers, the people with one leg and a prothesis and even no legs, the runners pushing their severely disabled loved ones, and the blind runners, with full faith in their running guide. It was moving on a level I’d never imagined. Such courage in the face of overwhelming and seemingly discouraging circumstances is always inspiring and I am sure there is a full novel behind each of those participants I witnessed. A lot of them were smiling. There were men and women with no legs, blind, withered legs, no arms, the full gammit, gliding through the streets with joy! I felt grateful to witness this. What a gift life can be when we remember who we are and cherish every moment, not in an unrealistic way, yet open eyed and steeped in reality.

So, my story is that I get the opportunity to be a guide for these precious souls I call my children. The brevity of this time I get with them is never more poignant than when I find a picture such as I posted here and get a glimpse of the past, a flicker, an impetus to remember, through even the terror, turmoil, heartbreak and pain, it all passes and what we are left with is today. Now I can put two and two together and remember that girl in the picture with the five kids, as part of history. For that I am grateful.

“Sometimes I need only to stand wherever I am to be blessed” Mary Oliver

So on the way to drop of my 5th grader one morning, she said, “OMG, did you hear the Zahn left One Direction?, I guess he wants to go back to being normal….but mom, I don’t think he can ever go back to being normal, he has a mansion and stuff!” I replied with “Probably not” and there was nothing else said regarding that and she went to school. As I drove home, I thought about it, the idea of “normal” and teaching my kids about life and “normal”. I learned that “the trouble with normal is it always gets worse” (Bruce Cockburn). So what do I do with that?

How do I learn to live with an open heart and how do I teach my children to do so as well? We’re learning together. Today was Easter Sunday. Three of my children and I went to my mother’s church for services. My one other child remained home sleeping. She exists in a different paradigm. No, wait, I mean time zone. I think. Anyway, we trekked to my mom’s church and sat in the 3rd row. Service was great. After my years in utter rebellion and anger at organized religion, and God, I can now see past the veil and hear the message. My kids have been victims of my prolonged strike. They have not had the opportunity to choose to attend or not attend, as did I. It’s ok though, I am catching up with answering their questions and sharing my viewpoints and philosophies of life which of course mainly focus on spirituality, a term I far prefer to religion. There is so much to teach them and so much more to learn myself.

I once heard a dharma talk which spoke of a woman who daily passed by daily, the same homeless man on the street. She always gave him a bit of money yet never stopped to so much as look him in the eye. During the process of meditation, a concern arose within her regarding her “lack of compassion” for this man, and how she might possibly overcome this feeling despite the daily donations. Ultimately, for this woman, her biggest fear was that if she stopped long enough to hear the man’s story, he’d be sleeping on her living room couch. Doesn’t this so much represent all of our fears regarding opening our hearts? The fear that we won’t be able to withstand it without complete immersion in the person’s life. A solution to this woman’s dilemma was suggested that maybe, looking the man in the eye and having an occasional brief conversations might be a reasonable middle ground solution. Thus she opened a window in her soul and slowly was able to open her heart a bit more using this experience with the homeless man as a template for living and existing in this world with an open heart and not dying from a broken one.

Kids are not quite so jaded and and a bit more willing to open their hearts to situations they encounter. Example:I heard that my ex husband’s dog, a cherished boxer, had to be put to sleep for numerous reasons. My son was sad. So sad. He cried at school and at home and our other kids were sad too, but as he is the only male, and you know the deal with males and tears. Thus his openness in expressing his feelings and vulnerability, was allowed and encouraged by his support system at school. He attends a program for children with developmental delays. I have observed that his feelings are validated and processed in all situations that arise during the school day and this practice is something that I wish extended to the general curriculum for all students.

What I see as the most crucial elements of learning to live with an open heart are so often squelched by the fierce independence and rugged individualism required to succeed in our American society. Reliance on friends and family, let alone any sense of a larger purpose as a human race are somehow not given much value. To cry, to express outpourings of emotion is seen as weak and immature. We feel embarrassed, inferior, and out of control. In reality, it is that essential vulnerability at these moments when our souls somehow tap the flow of connection to something bigger and far more beautiful than ourselves alone, that we often fear. I know I do. I struggled growing up as an extremely self conscious, overly sensitive child. I was the only one in my third grade class who cried during the movie Snow White, for God’s sake! I couldn’t stop the tears. I was horribly embarrassed, and filled with self hatred for my weakness. My kind teacher pulled me out in the hall when she noticed my tears and told me she cried every year when the school buses pulled away on the last day of school. This simple act of kindness has stuck with me all these years and over the course of my adult life, I’ve medicated, drank and drugged, ran from my open heart, projected it and finally learned to face it and accept. It’s part of my curriculum in life, and I am so grateful for the ability to feel deeply and as surely as the tears roll down my cheeks I know, in equal proportions, smiles and laughter will inevitably flow as the seas of emotion shift.

Right before it was time to leave Grandma’s house in Connecticut today to travel back to our home in Massachusetts, there was a heated discussion between my son and youngest daughter over who was going to sit in the front seat on the car ride home. This discussion rapidly escalated, mostly on my son’s part, and due to some seriously intense misunderstanding. He lost all control of his emotions and a rapid and unstoppable descent into rage ensued. All I could do was not look away, not scream at him for his loss of control yet at the same time protect my terrified daughter from the wave of dark forces he was riding. And that’s just it, I have to see it as not really him but almost as if he is possessed by an energy beyond something he can control. To witness this frequently is heart wrenching, and we do, witness it frequently. We have some strategies and consequences at school and home, but mostly, it’s just riding the wave and staying safe. The tears always come for both of us, sometimes all of us. It’s real, it hurts, it kinda sucks, but also it’s a beautiful thing to feel one’s heart open to each other as we sit through the fear and rage and come out on the other side.

The spiritual layer will come for them when it is time. I do trust they will remember, as did I, the example set for me by two extraordinary parents who, in retrospect authentically lived and live with open hearts. I strive to do the same for my children, and as we all do the best we can, I’m grateful to have been shown the spiritual tools way back when I was a smarmy, know-it- all, young adult. I just tell my brood that some day they’re going to need this stuff. Ha ha, right? Usually I get the eye roll or a shrug and a segue back into the discussion of the significance of Zahn leaving One Direction. God willing, it’s all there, stored within them, like an acorn waiting to take root in their hearts. Godspeed!

My 19 year old daughter is an awkward rapper, on her own terms. Her umbrella diagnosis is tuberous sclerosis complex, but one of the tangential diagnoses she carries is autism spectrum disorder. Without going back through her medical history, Id like to talk about her amazingness and how incredibly brave and fascinating her journey has been. The funny thing that’s happening now is she’s becoming aware. For so long, it was almost merciful that she was not, as the abundance of the awkward looks of combined sympathy and condescending confusion, flew right up over her head. Now, not so much, so in some ways it pains us, she and I , but in other ways, we all clap our hands.

Her autism is atypical which is an oxymoron in and of itself. She develops obsessions, narrow focused interests which have changed and become more and more complex and intriguing over the years. We talk about the past obsessions almost like old funny friends we’ve come to shake hands with and send on their way. Some were, in retrospect, absolutely hilarious, yet only after much time has passed, as these obsessions have owned her and at times myself. One of the first ones I remember is the wearing of her bathing suit. 24/7. And yeah, I’m not supermom because I didn’t try to force it off of her. I rolled with it. It was a sensory thing. She wanted to feel all tucked in. So she wore her bathing suit day after day, under her regular preschool clothes. Her teachers accommodated it, I dearly loved the special needs programs she was in at the local elementary school, they really “got” her, which has been the key to her metamorphosis over the years. The ones that “got her” and the ones that didn’t. But I digress. She wore the bathing suit until she developed a strange blotchy rash all over her body. I took her to the pediatrician and doc said no more bathing suit. Cold turkey on that one. Was not fun.

The next one was a spin on the bathing suit. It was not having her pants feel tight around her waist. The one blip I’ll share in regards to this one is being at Boston Children’s for an ultrasound by the pedicardiologist. I was preggo with number 2 and they were checking for various TSC related heart issues. My brother was in town and he came with me to help with Mary Ellen. When I came out of the appointment, and I asked him how it went entertaining her in the waiting room. He said, “Fine. Anytime she wouldn’t listen to me, I told her I’d make her button her pants if she didn’t.” It had worked. Case in point on this one.

I won’t bore you with a walk through the etiology of these obsessions so I’ll fast forward a bit. There was Thomas the tank engine, who she thought she was, and we had to refer to her as such, sponge bob, monster trucks, the family guy tv show, being heavy, being thin, webkinz, being a famous singer, and finally, thank God, onto learning Spanish and all things of Spain, teaching herself French and all things of France, and now, right wing politics (think karma, Jill)….

Thing is, I don’t know what it’s like to be autistic. Sometimes I get caught up in how her way of navigating life affects me, and it does affect me. She repeats a large repertoire of humorous vignettes and events on a daily basis. The library keeps expanding yet it can get tedious. So sometimes I float. I know the play she puts on for the day, and I know my part. Lately though she’s been metamorphosing and I’m forced out of my disengagement and have to really think. Wowzers. And I forget that she doesn’t always get my tone or my words and often misinterprets, horribly. This afternoon I was explaining to her why she is NOT a menace to her whole family after this direct quote from a text, “I don’t care what people say about me. I’m not afraid to love myself and political affiliations. I’m sorry that I may seem like a menace to the whole family, but I’m staying in this room until this apartment is vacant”….yeah, she needed some coaching after this text. I realize I need to explain things like having an opinion and being opinionated as well as not taking one’s self too seriously, yet also loving one’s self, despite any external perceived flaws. I explain these things to her and she cries. Then she tells me, “mom, that’s so beautiful”, and I realize how much she’s missed and misinterpreted due to her awkward rapper status. It grieves me. I wish I knew, but it’s never too late.

So at Mary Ellen’s last educational program, she made up this little gimmick with one of her other autism spectrum friends called “the awkward rapper” and somehow the humor in this is great to her and the irony and depth of meaning it carries, also not lost on her. There are many times I want to pull my hair out and run screaming into the street after a day of putting her back together after she’s had a mood swing or even a medicine crash. It’s exhausting, as I’m sure many of you know. Until I had support, I remember wanting to almost hurt myself it was so painful, and lash out at her and anyone else who came near because, of course, it wasn’t fair. Now to see her experience the injustice of life on some level, is excruciating. Yet, this is our life, hers and mine and her siblings, her father.

She touches so many with her radiant beams of pure love and joy that she casts on a daily basis when coming in contact with those open to receive. I have a friend that has said to me, “Mary Ellen is just a great big ball of love” and this is so true! My awkward rapper just turned 19 and I keep on affirming her own strength in overcoming what are atypical challenges and to not compare herself to others on a different path in life. I find it interesting that all the obsessions are not who she is but just painted on identities. While intermittently infuriating, if we all can see past the mask in these kids, and let them know it’s safe to give us glimpses of their true selves, all of humanity will be enriched and broadened by the tangled blessings that these autistic children represent. For Mary Ellen personally, I mostly want to convey so much hope and the measure of rewards that have been received by all who have risked getting past the identity to the person that she is beginning to believe she is.

I’m in snow induced lockdown with four kids right now, again and I finally farted around enough to get myself to sit down and write….Ok, I’ll admit, I have been struggling to find the perfect mom-kid-parenting blog topic, when an idea suddenly occurred to me. Why don’t I google it? I pretty much google everything else. Sometimes just for fun or to win (or lose) an argument or mostly, just to know. So I did. Of course I was overwhelmed with information. This is the one I chose:

“Eat, Pray, Love is the story of a woman who pursues the things she thinks will bring her happiness. If you could find it in yourself, that bit of bravery to leave the comforts of your everyday life behind and pursue your own happiness, where would you go and what would you pursue? “

Whoa. Right? That’s big and bad and brave, vibrating right on the page there staring at me. Yikes. I feel a little bit scared and reticent, but will persevere, just don’t judge me for it. Or if you do, keep it to yourself. I’m procrastinating. So in a lot of ways I have done this but it hasn’t quite taken on the outside appearance of happiness or success, yet I never, even in my darkest moments, quite rolled that way.

Let’s see….I have ended 2 marriages along the way, given up custody of one kid, maintain physical custody of four kids, 3 with some degree of significant medical involvement, moved probably 9 times since my first marriage, gotten into a pickle, or became a pickle with alcohol and addiction issues, came into recovery for such addictions, and I guess my biggest spin on all this is I’ve learned, for me, the key to happiness is knowing what happiness means to me and living a day at a time. But also, I pretty much don’t know what I’m doing most days.

It’s taken me until well into my 40s to understand what true happiness is for me and it’s not like the super high happy, it’s in learning and knowing it’s all illusion, pick your metaphor and watch yourself. I try to sit back and watch it all run off, all my seriously calculated moves, determinism and free will in action all at once. Thanks Ram Dass for raising my consciousness. Thing is, I always come home and there’s a huge mess in the kitchen, dishes in the sink, my dishwasher is still broken, there’s piles of laundry and the kids want to show me stuff and tell me stuff and I just want to sit on my ass and update my facebook with pictures of myself observing myself and it just all falls apart into the reality that is mine.

Leaving the comforts of my every day life hasn’t been easy. Some days I wake up in my bedroom and wonder how the hell I got here? I remember every bedroom I’ve lived in with a man and all the times I woke up and wondered how I’d get out of there and how miserable I was at the time. It’s sad to think of, and a lot of it was really me and my own misery, but I did get out and sometimes it is still scary.

I have no retirement plan, maybe the wind blowing a shitload of cash in my window, like winning the lottery or such. I have to live in the now and who am I kidding? I have people there to help me when needed, friends!!! I love my friends. And my Mom. I have to ask for help sometimes, so I don’t fall through the cracks and my kids get fed and clothed and go to school and I have a little job so everything flows right now. Prayer. Always, all the time, like , “hey God, please help? I’m tossing all my problems up to you now, please handle and thanks and grateful for every minute even though I’m really pissed off right now because my daughter says she hates me and I’m the worst mother ever. Thanks for being there. God. “, and that’s how that goes. Faith is a big part prayer mixed with weird bravery. I have faith that God, aka the universe, will provide as long as I go with the flow, not against the flow. It has proven true thus far.

Love. It’s all love, but to dip into it more specifically, I’m in a new-ish relationship which has taught me so much about love. I’m not used to listening to my inner voice and making tough choices in regards to relationships. It has scared me. It has almost scared me out of this relationship, but finally, I broke, he broke and it’s come together in a better deeper, pinch myself, is this really happening??? way. That’s all I can say about that, and Mr. X. Oh yeah, thanks too.

Love for my kids and their future do loom over me as several of them are not typical and many days I cannot choose my own seeming happiness but must find a way to guide them to theirs, which is ultimately a big part of my happiness. I could never leave them behind and knowing they need me and love me has often kept me clean and sober whenever a thought of using or picking up occurred to me. I realize, how quickly I’d lose everything. Starting with my kids and working my way down to my soul. I just got my lovely soul back, which is your soul, our soul, thee soul and I like to get all abstract like that and deep but life calls and I’ve got one more aspect of the blog prompt to address.

Eat. Another miracle, that I am not all wrapped up in eating and weight and that. Well, I am but I’ve found a system that works for me. I refuse to ever, ever weigh myself, as that would, like the first drink, or pill, jump start the addiction. Even at the doctor. I have them weigh me backwards, so I don’t know. I used to weigh myself every single day, multiple times and it was horrid. Fantastically horrid. I also run a lot. I used to feel guilty taking all that time, but I use that time to listen. Listen to all different perspectives on life and being via podcast. So now my running has more of a purpose than fulfilling my need to control my weight. It is that, but it is also very therapeutic on every level. The food and weight obsessions were my first addictions and led me down the road to all the other ones. Anorexia and bulimia, separately and together.

I think most women struggle on some level. Our perception of the outer more important than the inner being is pervasive. I buy into it despite all my professing of constant higher consciousness. This is the hook that will pull my soul back into another incarnation. I gotta work on this shit. I have and and I do, and I’ve found a system that works for me so I can EAT! I enjoy it and I don’t fear it and that is true mercy and grace.

So kind of sideways and backwards, more like pray, love eat and happiness running through like the hot fudge in a really yummy sundae. I want to qualify all this by saying I am so far from perfect, so much so that I need to tell you, because there’s obviously some unresolved guilt driving me a bit. So what that I’m not perfect? Shut up you crazy brain! I like to lay in bed late into the night and binge watch Netflix. I like to sit and my computer and zone out on the internet, I take naps. I am horrible with money. This is the first time I’ve admitted that out loud. In public. And now I will stop because I am tired and I need to edit this, post it and go take a nap. Despite this meandering diatribe, thanks, so very much, for listening dear readers. I hope we all can step it up a notch in this lifetime so maybe, just maybe, we can shave a life or two off our evolution to pure being. Grin. The End.

A few days ago, January 23^rd, was my mother’s birthday. I cannot tell you how old she is because she would; a. kill me, and b. I’d be dead so moot point. Actually, I kind of forget how old she is, maybe b/c I’m getting older, but probably more because she defies age with her youthful spirit, incredible energy and continual pursuit of educating herself and others. She is unselfish to a fault and incredulously loving and caring to all, especially her children and her grandchildren.

I am always holding her in my mind as an shining ideal of what a person should be like and how I should strive to be. Yet I’ve had to come to terms with the fact that I fall short. I take naps, I don’t finish everything I start and sometimes I just want to sit around and do nothing. So, up until the last 3 years or so this has been like a dark cloud, this impossible ideal that she represents, and as I reinvent my life, I accept myself and my nap taking, Netflix watching, just “being” self. This acceptance really has been a springboard for growth in a relationship of two related, yet very different people, accepting each other just as we both are. I love this! Who would have thunk? My mom is my friend. All I had to do was drop my armor a bit and of course go through years of therapy. No joke.

I think we all struggle on some level in our relationships with our mothers. They are the ones through which we came to be, the channel to our birth as humans. Much of my struggle has been that I identify so much of myself in my mother, and well, I liked to deny it. Despite our differences in thinking, I look like her, sit like her, my mannerisms are hers, my habit of choosing my mind over my heart-hers, task driven-her, and somehow now have a faith like she does. Hey, not all bad! Life moves so quickly and at some point all that will be left is our memories of each other and that damned genetic code that sprouted and grew like and acorn gone mad so what the mannerisms and such. I got the faith!

My mother, myself and my brother, would often go for walks on trails in the woods. My mom is somewhat of a naturalist, self educated and otherwise, and one of her jobs when I was in grade school was leading walks on trails at a local nature center. Taking a walk with mom was like going to the museum combined with running on the treadmill, combined with reading the encyclopedia. A whole lot of information was gifted upon me while I was exercising. I didn’t know it then. I do now. In a big wide open, grateful way. Sometimes, when I’m out in nature, to which I return often, with my children, or running trails in the woods, the name of something I see will suddenly burst forth into my mind. It’s a Larch tree! Or a showy lady slipper! Or Sassafras and Witch Hazel. I learned to appreciate these glories, even if I was a grumpy bear then.

She tried to get me to cross country ski. And I did learn, begrudgingly, and mostly, my brother and I wandered off course in pursuit of any sort of large-ish hill that might give us an actual thrill. That was then and any sort of hill seeking skiing now would put me at high risk for permanent disability. She still skis like a maniac and I’d be sweating bullets to keep up with her. No lie. So I run instead of ski. In the woods on the back roads to visit the trees with their vein like branches outlined in the winter sky, working downwards to the sturdier branches, gnarly trunk and spreading roots. All speak to me of these graces bestowed. Mom taught me to look. I never would have known to be grateful for this simple beauty if not for her and, I cannot believe I am not sneering at myself with that irritated sense of wanting to just be done, the product not the process.

Sometimes she comes to visit. Well more than sometimes, often. She needs help coming in. Not because of any age, or inability, but because she is weighted down with items. Like raspberries and blueberries, pineapple and watermelon, which is perfect because otherwise my kids might have scurvy. Odds and ends she knows I might need like batteries and lightbulbs, and sometimes toilet paper. I used to take offense. As if!!! I couldn’t take care of my children and myself??? Now I’m just very “Thanks Mom.”. I love you Mom. I hope I can do half the job you’ve done. Happy Birthday, a few days late. I started this on your birthday, but got distracted napping and watching Netflix.

When asked to write a blog for this newsletter, I was thrilled. The topic, “Letter to a young TSC mom” was also exciting, I was sure it would be a no brainer, a home run, not even sliding into home. Not so much, as it is never easy, but surely on this topic, I’d wax poetic. Oh well. I started several times, even got part way, and then it all felt false, pretentious and redundant. So I scrapped it all and went for a run, my go to OCD behavior that seems to jump start something up there in my head. And it did…

So now, what I want to tell really is more of how TSC has become a springboard for personal transformation, and how I’ve come to accept what was for a very long time, a “long walk in a sad rain” (Johnny Cash). Maybe some of you caregivers out there can save yourself some trouble, too, from my experiences.

Backing up a bit, I have five kids. My oldest son, Woody, from my first marriage, is 23, married and living in China. My other four live with me in my 4 bedroom apartment in Rutland, MA. Oldest, Mary Ellen, is 18, Sara is 16, Jack (John) is 13 and Caroline is 10. The oldest three have TSC. Mary Ellen ushered in the long, strange trip we’ve had with the disease. While I hardly recall many of the emergencies that composed the early years of each of these kid’s lives, I’ll never forget the day of Mary Ellen’s diagnosis, as I’m sure, any moms newly on the receiving end of a TSC diagnosis, will either ever forget. Standing in a windowed room of Umass Hospital ER, watching Mary Ellen continue to seize, while at the same time seeing my husband being led to a dark room with doctor, who would use the Wood’s Lamp, to initially confirm his suspicions that Dad had mild TSC and daughter, Mary Ellen had inherited it. Not such a good day. Blindsided, horrified, confused.

I remember, as am sure you all do, reading everything I was given by the attending pediatric neurologist regarding Tuberous Sclerosis, none of it good. Denial kicked in. Of course my baby was not going to have these problems! No, of course not! I could surely will it to not be so. Then of course, came the the horror show of the next few years, getting her seizures under control, the many legions of medical specialists whose specialty I with which I was now familiar. The early intervention program, home therapists galore, playgroups, surgeries, medications, ER trips, etc etc etc, you fill in the blanks. Then onto the other two with TSC (“gee thanks God”…imagine childish, smarmy tone of voice), but somehow, I don’t think that’s really what you want to hear from me. You KNOW it. Personally. I can play the martyr of TSC until I’m blue in the face and out martyr all the other TSC moms and dads. But who really cares who has it worse off? And these days, I’m humbled, almost on a daily basis, by the trials and tribulations of those I with whom I am friends on Facebook, who have children with far more intense issues than I ever experienced with my TSC kids and who handle it all with grace, dignity and humility. So who am I to toot my own stupid martyr horn anyway?

I think, upon receiving the diagnoses back in 1996, I too wanted to rant and rave about my misfortunes with the condition, the anger, guilt, fear and overwhelming sense of injustice that now colored my world. Now I understand that too was part of my grief process. It was more of a relief when I found a group of others on a ts list serve that really truly understood. This was all we had waaaayyyy back then, an email group/chat group, kind of thing. That was the first time I felt less than alone. I’d also decided that my husband, who was working full time and in law school, was not going to have to deal with any of this TS business. After all, it would be far too much for him to handle, with he being the genetic donor, AND breadwinner. Don’t do this. No matter how difficult it may be if one or other of you parents are the carrier, or merely caregiver, keep the other involved! Go to doctor appointments, meet with therapists go to IEP meetings, together. It’s crucial to share the challenges and not hog them all because hogging them all hurts both partners. It didn’t play out so well for me and my marriage so in retrospect, speaking to this captive audience, just plain suck it up and share the pain. Even if your spouse is not able to participate in everything do to employment needs, talk about everything regarding everything regarding your child, as you would a typical child. You can’t do it alone, even if you think you can. I assumed it would be too much for him, when I didn’t even ask.

So I was able to connect with a few women who had children with TSC through the TS Alliance. It was called the NTSA back then and was really just ramping up. I met with these 2 women, with our kids, many times in those early years when I just had Mary Ellen, and have stayed in touch, to a degree, with one of them, ever since. They were a life line. As was our pediatric neurologist, Dr. Elizabeth Thiele. She discovered me after I’d had my daughter Sara and was barking out orders to the interns at Beth Israel Hospital in Boston, regarding the tests my daughter needed. Dr Thiele had just been hired to start a Tuberous Sclerosis clinic at Boston Children’s Hospital, and was actively recruiting patients. I’d had a male pediatric neurologist at the time, but from the first appointment we had with Dr. Thiele, she was our doc. I felt like she was God.

I sat in a small office in some back corner part of Children’s Hospital to meet with her. I’d just learned my daughter Sara, an infant, was also having the nasty infantile spasms that Mary Ellen endured. I was at my breaking point. Mary Ellen’s behavior had become a huge stressor, she was at that very appointment, throwing herself around and banging her head on the floor, like a raging bull. I sat and cried, Sara in my arms, Mary Ellen freaking out, and Dr. Thiele heard me. She didn’t tell me it would be ok. Never has she done this. She offered what hope she had at the time, gave me a bit of a plan and I think she shed a few tears herself. This is what I love about her and I encourage as many of you out there as possible to seek out this sort of level of compassion and humble intellect in your treatment team. I like to think of myself visiting her and tossing all my worries, fears and concerns right on over to her, then walking away with at least a bit of a lighter load. She has made this disease seem not only bearable, but on some levels, fascinating and understandable to a lay person like me. Plus, her love for my kids, shines through, clearly.

Sheesh, this is getting arduously long. Keep with it. This final part is the train wreck, so don’t look away yet….As the years went on, there were many ups and downs with my kids and their TSC. My best moment by far was getting the call from the local geneticist that my fifth and final child, did not have TSC. I fell to the floor and wept. In gratitude….to that higher power I like to call God. My worst moment was of my own making, from which I’d like to save you young TSC moms the trouble of enduring. Yet, cannot really save you, but maybe let you take note of my experience.

I decided that the stressors of taking care of my precious gifts of children, with and without TSC had driven me to the brink of sanity and the only only possible adequate course of action that would steady me enough to continue on this ragged path that I’d been set upon, was to drink like a fish and abuse pharmaceuticals on a daily basis. I started drinking and dabbling like a lady, but soon enough was like a wrecking ball, justifying each and every drink and pill, completely and unabashedly justified. Seeing MY life circumstances. After all, wouldn’t you? My friends all told me they’d drink every day if they had my life. Somehow, I failed to notice, that they didn’t have my life and they drank almost every day anyway. Hmmm, good mentors?. I thought I was all that, the super mom that took care of her kids with issues, and the crazy party mom that just liked to play hard. Trouble is, party moms under the influence don’t make good decisions about pretty much anything and I fell victim to my own habits. I blamed TSC, my soon to be ex husband, my childhood wounds, everything and everything I could think of. Every TSC event was reason to fall deeper into the pit of addiction. In time, I was living a lie, a phony lie of pretending to be super TSC mom when I was really just not-so-super Jill, addict/alcoholic. The phony police, disguised as my ex husband and a close friend, (thank God for them) sent me off to get help and that was the turning point for what is now becoming on a day at a time basis, a life beyond compare. In some time, I found myself and thus am now present, fully present for life, despite the daily challenges of life, let alone caregiver for children with TSC .

What I feared in those early moments, that “this won’t happen to my kid…” has happened. Many times. The seizures, the facial manifestations, the compromised kidneys, intense pharmaceutical treatments, surgeries, developmental delay, etc. You name it, it’s happened. But it wasn’t ever ever as bad as I thought because it’s truly as it should be and there is nothing other than educate myself, seek out the best doctors and treatments and pray, to anything bigger than myself. Oh yeah, and there is the praying, mostly just praying like a soulful pleading, “Help!!!!!???!!!”. A good number of you know this prayer.

But don’t let me fool you, I still have my moments. You all know those moments. When no matter how soulful and steady and at peace you are, some new TSC related challenge rears it’s ugly head and you feel that white hot flash of rage pass over you. This is when I want to lash out, at anyone and everyone near and far for the pure injustice of this disease, I want to get in the car and drive to Key West and start my life over. Mostly, what I end up doing is weeping. Weeping for the pain and anguish my kids must suffer at the hands of this horrible disease, weep for my inability to fix them.

So it is we mothers and fathers of these kids that must eventually hand the baton to them. This is our mission, so to speak, or my mission. To give them the opportunity to become as independent as possible, to know how to care for themselves. For some, this task may not be a possibility, given the measure of manifestations in many with TSC, and my heart grieves for you. Yet know that I am inspired by your daily fortitude and honesty, as read in posts on Facebook and elsewhere, so do know that you are doing for me, what for a long time, I could not do for myself, and thanks. I guess love, for me, is the answer. To find the space within myself to love the unthinkable, to accept that why they must suffer is beyond my comprehension, yet to find some measure of gratitude, even if it be for a peaceful minute at a time, it’s there and thank God I found it and can be there in mind, spirit and body for my kids, for just another day at a time.

It is often I sit, butt in chair, uninspired and push the word across the page. I cannot wait for inspiration but must dig and tunnel for it from the depths of my person. So…. what happened over Christmas vacation? Not much. And a lot. It was our first Christmas in our apartment, away from the seeming warmth and comfort of having a Christmas in a house with a fireplace and a chimney. We did all the same things we usually do, we got the tree, we bought some new decorations and dug up some old ones (thanks mom). Things seemed to just flow. I remember years of arguing and manipulating the tree to get it just right in the stand, often pulling out our hair out and resorting to full swearing, then wiring the damn tree, and letting the cat outside for the season, with force. Turns out, it wasn’t that bad and I am sure God smiled on us, we five, in our 4 bedroom flat, living on a prayer and a shoe string. The tree went up without a hitch, in the stand and no swear words were involved. Jack, my sturdy 13 year old, helped with that. Then I got the lights up, the garland, easy peasy. The kids decorated the whole thing independently, I did not put up one single ornament. Caroline added lights around the windows and put up the stockings. It was truly beautiful and my seasonal affect started to creep upwards.

I am kind of dragged into these events, not being much of a planner, more of a fly by the seat of my pants-er. I am not sure why, but probably some of it involves fear. Fear of the stress I know I will put myself through if I try to micro manage this annual event which has almost become a soulless force of commercialism and greed. I asked for help from the Gods above and sat down to order my children their presents on Amazon (hmmm…commercialism and greed?.) But oh well. I had lists and big ticket items, few of them, so it was fairly simple. The financial damage was absorbed by Santa disguised as generous family members, channeling God, I do believe. Hah! Most likely, my kids would agree that it was a great Christmas. One of the perks of divorce is that they got a full on bonus Christmas with Dad, who also came through with the goods, the dinner and the fun.

So now the other bookend started in motion, a few short moments ago, the tree defrocking and pine needle extraction for which I was pulled off my chair to participate. In fact, I still can hear some odd noises coming from the vacuum in the other room, I might need to check out. As I listen and cross my fingers, too lazy to get up now after sweeping the stairs of the building to remove post tree pine needle damage, I reflect on the vacation and what we did, didn’t do and how to sum it all up so I can be purged of this writing project and free you dear readers to peruse other, more important parts of this website.

Time was spent with my mother, their grandmother, who does in every way possible, successfully enrich the lives of my children and myself in such a way that my head is left spinning when I remember her age. I do still believe she is more energetic than myself, though now she takes naps. We went to the New England Air Museum, which was an unexpectedly fun outing. We all did some extra sleeping, movie watching, eating and of course technology immersion. I’ll cop to that. None of the kids received technology as a gift for Christmas, not even by plan but by their own choosing. Lego’s, a gymnastics mat, painting and drawing tools and fancy purses were the call of the season this year. This holiday season has been one of the best I’ve ever had, maybe because I went in with low expectations, and tried to step out of my own way as much as possible. Nothing was perfect, but it was lovely, blessed and meaningful, for me at least. Not sure about the kids and the meaning yet.

Oh yeah, and Happy New Year!!!

http://blog.wegohealth.com/2014/12/16/jills-tuberous-sclerosis-complex-journey/

Right now, about every single muscle in my body is screaming at me, my head feels foggy, my synapses are fried and all I want to do is crawl to my room and go to bed. There is no second shift, no neighbor nearby or relative, just me. And tonight, I tell you, I hate it. I flipping hate it. I picked them up from their father’s house after my meeting at about 8:30pm. They got in the car all wound up and high on fun with dad to down shifting into, “oh yeah, there’s mom, I remember what I was mad about before I went to dads, let’s carry on with that”. So they do. I have a friend in the car with me. Any of my friends allowed to ride in the car with me when I get my kids, is someone I hold near and dear to me, and this was one such friend, so that was ok.

By the time we got home, Jack had Mary Ellen worked up into such a lather that I was afraid a punch was going to be thrown, by Mary Ellen. That is not like her, but as she’s been becoming far more appropriately assertive, I secretly applauded this justified anger. Jack was trying to get her mad, (we call this act, “poking the bear”), and he succeeded. Only this time, she did not take it out on herself in full autistic self-injurious fashion, but she ragefully called him a moron. Middle sister Sara, tried to jump in and mediate. She is pretty much the voice of calm, albeit frustrated, reason, but sometimes, it’s just adding fuel to the fire. Caroline also has a fierce sense of justice and will often take sides as well. Tonight it was different sides. I try to remain calm while striding toward the door to the apartment building, mentally preparing…… no, wait. Who the hell am I kidding? I’m not mentally preparing for anything, I can’t. As much as this has happened over the years, I have to stay loose. Tension going in, can be killer. I’m loose though am almost outside my body watching myself. I should be drawing on all the months of spiritual pod casts I’ve been listening to, pausing before the action, infusing my interaction with love and firmness and hoping to hell this is a teachable moment. For any of us. But alas, I’m not quite evolved enough for that.

So what did we all learn? Not ready to spin it yet. Right now, I’m still reeling a bit. House quiet, kids all in bed, and I am writing it out. During the worst part, when Jack became defiant b/c he wanted to put the fan in his window and blast cold air on himself all night, while the landlord watches the oil level drop, I wanted to cry. He tells me his father wouldn’t make him take the fan out of the window and I block that one with a sure hearted “Yes. He would!!”, and then the final plea on Jack’s part of moving far away from “all you guys”. Finally, the closing, heart-rending scene, is tears. This is when my stomach clutches and I feel almost resentful. Like now this? And that is all of it. He held his ground until the bitter end and he knew he could go no further and then he broke. He is a big kid, and his tears eventually soften my stomach to the point where my heart softens and I can feel his pain. But then again can’t, completely.

My parents stayed married. I have no idea what it’s like to feel so torn, that he seems to think he has to choose to love only one parent, one house, one town, while all that the other parent represents, at that moment, is crap. I think that’s what it is for him. Concrete. This soundly breaks me. Full on. The knowledge that I chose the divorce, and while I think overall it was the right move for all of us, there is fallout. This is a glimpse of it. The boy who is hormonal and struggles with school, now has the added stress of this mess to sort out in his head. The others too, struggle, in their own ways. After all, it’s not all about me, and divorce is always a tough call.

All written and I can go off to bed. Nothing was resolved. Nothing was broken however, and maybe that’s the teachable moment…..which my politically incorrect knee jerk reaction says, is cliché. I just don’t feel up to saying what I’ve been taught, nor do I want to guess at what we’ve all been taught in the previous scenario. I’m still riding this wave that it is right now, with my kids. Or, at least we’re all having our own experience riding this wave, on the same boat. There will always be waves. That’s how it is out on the ocean of life.