Coming Clean

On February 26th I posted this on Facebook while still in New York after the International Association of Culinary Professionals:

"I did something incredibly stupid or brave at the keynote address on Sunday - and I have feelings of pride and shame about it. Strangers have approached me after and I will be doing a full post on this one topic when I return home - but I just got this message from someone I love and respect and it meant the world to me.

Hi Jenny, _____ ______ told me how incredible you were at IACP's keynote address. She was so impressed and touched by you and the panel. I just wanted to say I'm sorry I missed it, but I take my hat off to you for being able to share your story. So many on social media only show how perfect they are, their lives are, their homes and families are. They're the cowards. You're the warrior."

                                                                           ****

This is that post.

In the age of social media where we post photos of our dinner, video of our kid's first steps and bad news with as much exuberance as good news, many of us hide our truth behind a keyboard. I am one such person. 

Overall, I am a brutally honest person. Politics, injustice, my son's battle with bipolar and autism are all shared with vigor and abundance. But my issues, my dirty laundry, I don't share. I avoid confronting my demons with as much strength as I do when I champion those that are fighting injustice. I avoid social situations and meeting online friends. If people see me, I believed they wouldn't like me as much as they seemed to in the virtual world.

Growing up I faced abuse daily - verbally, emotionally and physically. Repeatedly told that I was stupid, ugly, needed to lose weight and more. I didn't deserve anything. There is no need to recount the beatings, blood spilled and solitary confinement punishments which started my path of self-loathing.  

When my father died a few days before my high school graduation, I thought I would be free of that overbearing hate, but my mother was left to take up the slack. I moved out at 17 just having graduated and shortly thereafter, I started working for a doctor. Six months after starting with the doctor, I had just gotten a cute haircut, I felt good - it was the first one that I paid for at a hair salon. The doctor told me "Nice haircut, now lose a few pounds and you'll look great." I was 5' 7" and 130 pounds. The next week I got the flu. I lost seven pounds. I found my answer to becoming what the doctor wanted me to be and what I thought the world wanted as well. Everything would be perfect.

For years, the see-saw of starving myself, forcing laxatives, exercising four hours a day, battles with pregnancy, gaining weight, purging, starving again led to incredible weight losses and eventually weight gain. At one point before my first marriage, I was so distraught and tired of fighting this battle, I took a handful of drug samples from the doctor's office and swallowed them all. I recovered. Even my first husband, when I was still 5' 7" and 120 pounds once said something about an inch he could pinch. I was never good enough and never felt worthy. Once I heard an older nurse from an office saying to a patient, "oh that's Jenny she's the office manager, she just walks up and down the hall looking pretty all day." Man, I loved that nurse - I worked seven days a week and ran the whole office, but she said I looked pretty.  

Years later I met a New Yorker, named Jim. I knew he was my soulmate. In an AOL chat room, I reeled him into my boat. When we made our plans to meet, I started starving myself so that I would be good enough when I met him - which just added weight - trust me - the more I purge, the more I gain. But even then, he loved me. He told my mother on the phone "I love your daughter". Even during our dating and marriage, I never felt good enough and this was not his doing. He and his family have always treated me as one of their own, always better than anyone who shares my blood. I was the one that couldn't be good to myself. I was the one who would self-sabotage our relationship because I just knew I would end up hurt and alone. It is better to be in control of one's own demise.

Jim and I married and after two years of trying to conceive, we had a child, Andrew. When that boy was about a year old, I started running again, keeping food down (no carbs because carbs are evil) and was in the best shape of my life. Wanting to keep up the good work, I found out about these over-the-counter diet pills that gave me energy and helped me to exercise even more. Trying to have another baby, while abusing myself and then being body slammed with Andrew's diagnosis - I lost hope. The over-the-counter diet pills stopped being carried, I was horribly depressed and stressed with the battles of having a special needs child and a husband who worked all the time to give us a nice home. This led to even more purging, which led to more stress on myself.  So began the avoidance of photographs, people, social events and general hatred of myself.

This weekend I attended the International Association of Culinary Professionals conference in New York - it's 40th anniversary. When I registered, I said - this will be it - I will get everything together and lose the weight - stop starving myself, stop vomiting up dinner - and look good. That right there is the kiss of death. I had enough stress in my life without putting all these horrid unrealistic expectations on myself. 

I didn't want to meet anyone and I surely didn't want anyone to see me. I looked awful - I remember getting on the elevator facing the taunt of the mirrored walls and my reflection and actually said aloud "you are disgusting". The doors open and someone walked in and I was sure they had heard me. While I am writing this I am in tears. 

On Sunday morning during the keynote address and panel about topics such as #metoo, mental illness, drinking, drugs and racial injustice - something stirred in me. And I knew that when they stopped for questions, I would stand up. Kim Severson (from the fucking New York Times), Michelle Rodriquez (Executive Chef at Del Posto), Michael Twitty (The Cooking Gene) and Kat Kinsman (Hi, Anxiety) and another panelist who discussed food packaging/trends, finished their discussion and asked "who will be brave enough to ask the first question?" I stood up and there was no going back.

Kim Severson asked my name and I told her (yesterday they didn't ask names - but such is my lot in life) and I introduced myself. I mentioned that I didn't want to make this about me, but it was going there. I thanked them for telling their truth and confessed that I really didn't want to come to this conference because I didn't want anyone to see me. I went on to say that I have dealt with mental illness in my family and myself and that my son battles bipolar and autism. I have spent years bouncing from anorexia to bulimia and that this panel gave me the courage to stand up in a room of 800 people I didn't know or had just met and owned that. There was clapping, I think. I was out of my body. I mentioned that while drugs, mental illness, drinking are all horrific -- most people get that. But when someone, like myself, doesn't feel she deserves to eat and enjoy it, then runs to the bathroom to purge with the end result of gaining even more weight - she has no control, she is a pig. People don't get that. As Michael Twitty said, "Just eat a salad." Why, I would just purge that as well.

A discussion began on this topic - Michael understood - everyone understood. I went back to my table and had support from Jane and Jamie next to me. After the questions were over, I  went up to the stage and hugged both Kim and Kat afterward (later I spoke with Michael Twitty and got a hug). People stopped me afterward and said really nice things. "Are you the woman..." (I had gone back to my room to change my top to throw them off my scent.) I felt empowered. I can fight this.

I do remember just shaking for a long time questioning why I had exposed myself when I was alone working in my hotel room. Then I would go back out for a session or meeting and someone would hug me - and the regret would subside.  All during the meeting and appointments with publicists over those days in New York, everyone was very sweet. People at parties and dinners - hip people - laughed at my jokes and were so pleasant. I am a good person, I do deserve everything good. Things will get better. I found my footing. I spoke my truth.

We all have our rows to hoe, visible and invisible battle scars, secrets and dreams. For years, I thought I could do this by myself. I would confide in Jim and rely on his support until something would cause me to veer off-track. If we open ourselves up to the world, the world will come to our side. As Kat Kinsman said, she put herself out there and compared it to a country field at night. One single firefly lights up, then another and soon you are embraced by the light of thousands of fireflies. I need to hold onto the world's light, take strength from it, and fight the darkness. 

Remaining grateful

Yesterday, while making dinner, I took in my surroundings. It wasn't a conscious effort on my part, it was a whisper that nudged me. I saw my beautiful kitchen stocked with food and gorgeous tools, ingredients and spices out to start baking the next day, dishes still piled high to put away and I felt safe. Turning, my eyes caught the two small trees flanking our fireplace sent by our friends the Delgados and Withrows (later a tree - on loan - joined the duo from our neighbor and good friend, Elizabeth) when they heard we didn't have the energy to put a tree. The fire was warming our space while outside it was a nippy 20 degrees with a light cover of frost from the earlier flurries. I was grateful in that moment.

Every day for the last few months, I have been an unwilling passenger on the roller coaster that is Andrew. Being told to go fuck myself, that am a fucking bitch, that he hopes I die and the screaming and obnoxiousness that occurs most mornings and on the weekends wear me down. I know that he will end up hugging me, telling me he loves me, that he is sorry for being so mean and that he knows I do everything for him - but that doesn't make it better. The weekends are the worse. Andrew purposefully goes after his father and Jim can't ignore it like I try very hard to do. I don't feed into the nastiness - I try to deflect it even while it is seeping into my every pore. On the weekends, I not only handle how Andrew can be - I have to stress about Jim's reaction to it - it is picking away at Jim like a cancer.

The stress of living with a mentally ill person who is your child is suffocating. We have to remember to remain grateful for the improvements - that he is doing well at school, that these nasty periods are short in reality but seem like forever when they are happening, and that this loud house that is filled with worry is also filled with love. We have to remember we have great jobs that we love, friends that care about us and that things will get better permanently. I know they will - deep in my heart - I know that even when my words say "I can't live like this anymore."

I'm grateful for my family, friends and all the blessings I have and I will try hard to remain that way. I am overwhelmed by the generosity of our friends and family always but one thing really hit me yesterday. I was on a Skype call with Jane, co-founder of Eat Your Books, my boss. Andrew yelled, "Hi, mom's boss," and Jane said "I'm mom's friend not her boss." Throughout my life I have felt that I wasn't worthy of anything - love, friends, gifts and that mind-set made it very hard to really accept all the wonderful things I have and I'm not talking about material things. That ingrained feeling that I wasn't worth anything from my upbringing made all the wonderfulness around me seem like it was nothing. The glass was always half empty or bone dry. This year, more than any other, I have made the discovery that I am entitled to love and for the first time I accept it.

Being grateful is good, maintaining that gratitude - that is the difficult part. 2018 will be the year of gratitude.

Happy Holidays.

Where I am at

I hate people. Sorry, don't take this statement personally, I hate everyone, including myself.

Andrew has continued to struggle, hit, bite and act out in public and say horrifically unfathomable things to people - I will not go into details - it has been unbearable. Friday, at his therapy session the psychologist called in the response team - two guards, a nurse, two clinicians, a wheelchair and a partridge in a pear tree. I had calmed him before the Doctor got back. He had spent 2 hours running, cursing, threatening, posturing to hit and more (okay I went into some details) - the doctor left the room when he bit deep into my thumb. They had no beds at Children's in Aurora and I wasn't letting him go through all that again for what? Nothing works. So I laid down the law - and said no. No more hospitalization - we need to work on this as an outpatient and not resort to slapping him in a bed and a few days later telling us that he needs to get home into his own clothes and back to his life. I've been trying to do that since the first time he was in the hospital, then the second time. There is no third time's the charm. (The psychiatrist changed up a few things and added a small dose of a med in the a.m. and afternoon to calm him. He seemed better yesterday - but who the fuck knows how long that will last.)

Monday, he goes back to school with an ABA trained staff member in a smaller setting so he doesn't have to deal with all the stressors - i.e., people - he hates them too. He hasn't been in school for longer than an hour or two since May and those hours were filled with him trying to escape, cursing, threatening and more. I hate Douglas County.

I'm tired. At times I pray for death. At times I pray that I live long enough to get him all the help he needs. At times I wish I had become a nun but as Blanche Devereaux says - "nun, the name says it all".

While I'm on a list of things I hate:

1. People who are mean for sport. I'm mean to myself - I try not to be mean to others - but when people lie or mistreat others - I can be mean.

2. Mental illness.

3. People who think that others don't deserve our help and our compassion. People who think that others don't deserve insurance and medical care. People who think that everyone who needs help is lazy and a drug attack. People. Period.

4. The current state of our world.

5. I hate that my friends are struggling and fighting battles to live and here I sit whining and complaining about my battles. I hate myself.

6. I hate that my friends are struggling with their kids and I don't know what to do for them - because I am just as lost and terrified.

I'm trying to be a better person - I am failing miserably. I don't want messages, calls, emails or anything - I don't want anything from anyone - I just had to unburden myself from these thoughts.

Nothing to fear but hope

Two days ago my son started Lithium. He has had two great days. Earlier in the week, he had tried to escape the unit by pulling on staff's badges, by hitting and biting - pulling another student off a chair and honestly I can't remember it all. It was then that I asked the doctor to not postpone retrying the Lithium to do it as soon as possible as we have wasted so much time in the last four years. It feels like we have lived a lifetime in the last two months.

He has had two great days. Two. I'll take them but I don't trust them.

I have nothing left to fear but hope itself. I am trying to stay positive but honestly trying to stay positive and hopeful takes so much damn energy. I had given up on prayer. I had given up on God. I'm not sure where I stand on anything right now. I'm numb.

Today, I took a trip to Home Goods just for twenty minutes to get out of the house - somewhere besides the hospital. I packed my cart full of things - things to make me happy - when I got to the register I realized that those things weren't going to do anything at all for me. The sweet girl behind the register, Jenna, was kind - I kept a bottle of olive oil, a small bowl and a Italian pot that was a size I had been looking for and was a steal - and told her I was putting everything else back - that I didn't need any of those things and I was trying to make myself feel better. She asked me what was wrong. I told her.

She said, "I was in the hospital myself for an entire year my sophomore year of high school. I had cancer. Stage 4 - the doctors said I had less than 20% chance of survival. I'm cancer free now. God is good." She is 20 years old, beautiful, kind and alive today.

She said she would pray for Andrew. I told her I wished her continued good health. I'm not sure about praying.

When we left tonight, Andrew begged to come home and wouldn't let me go he kept hugging and kissing me. He hasn't done that in a very long time.

The plan is four more days of inpatient treatment. Then partial hospitalization. We have our IEP meeting tomorrow - I've heard that the district is ready to admit he needs an ABA staffed private school. They better be - I'm not settling for less.

The house is quiet and peaceful, I feel anything but. Good reports and progress have always been the harbinger of really bad things as signs of hope ushers in evil -- I will keep my head low as well as my expectations and then when the fall comes it won't hurt as much.

Hits keep coming

As many of you know, Andrew was readmitted to the hospital on Wednesday evening. Overall, things have been rocky - better at home when we are alone - he and I - as it seems every person added to the equation makes for more stress - for everyone involved. Or it could be that I truly understand him more than others, even his father.

Dealing with depression, social anxiety, bipolar is something I totally get - my mother was bipolar - and I have a number of issues. I have to fight hard to be the totally with it woman you all see (are you laughing?) - in other words I'm a fucking fake - you know the tears of the clown stuff.

On Wednesday at school, he picked up a rock and threw it - why big rocks are right aside the SED classroom is beyond my comprehension - just as with our latest election  - it makes absolutely no fucking sense. He threw and broke a computer. He said vile things to the staff. He postured to punch an aide and the teacher and came one inch away from poking the psychologist in the eye. Remember, when I told you all - that the program there was not right for him. Yeah, I told them so.

He has gone from a frustrated brilliant boy who use to curse a great deal and sometimes clear the table when he became angry - to a boy immersed in autistic behaviors, inappropriate gestures, extremely regressed to baby talk at times and wants to be with me every single moment. Him being in the hospital again is tearing us both apart.

We are drowning and there are no life preservers for this shit. I can't seem to make the hospital understand that this is NOT Andrew. Prior to the hospitalization - he had really bad moments, really angry moments - now he still has those but he is a shell of who he is - and I want him back. Is that too much to ask? I'll deal with the outbursts - if I can have a conversation with him again - if he doesn't have that far away look in his eyes - if he doesn't act like an 8 year old version of the ruler of North Korea.

He isn't on anything new medication wise. Most of his medications were removed and just a few remain. Right now, the staff is befuddled as to what the right medication may be.

I just want my boy back - for better or for worse. I go to the hospital and feel like I can't breathe that there is so much sadness and hurt in the air. I know friends are battling cancer, I know friends are recovering from hurricane damage and I am thinking about them always - but when someone says there dishwasher broke and they are distraught, I want to pick up a rock myself and fling it through cyberspace. Be grateful for your life - I am trying hard to be grateful for mine even though I am fast losing faith in my God - I don't think he is there - if he ever was.

This is were I am at - lost and looking for my child - like Shirley MacClaine in Terms of Endearment - he's in the hospital again, we're following all the fucking rules - just give me back my son - it's way past 10 o'clock.

What No One Tells You

Words have been tossed at me for years - grabbed onto like life jackets, "once they get his medicines figured out things will be so much better. They were for my pick one: child, mother, sister, brother", "when he is older and more mature things will be better", "I had two children with ADHD" (translate: your bipolar son with autism can't beat my pair or three of a kind), "I'm here for you" or "let me know if I can do anything" (translate: I care enough to offer to do something but I really won't be able to do anything, ever).

What no one tells you, is that if you have a child with a neuro-psych diagnosis - you are in this alone. No overnights, no parties, even parents of other special need kids flee when your child's behaviors make their child look like Shirley Temple.

What no one tells you - that if you strip away the meds while trying other meds - your brilliant, angry child will become more autistic and the aggression will be lessened but the bizarre behavior will always be there and the hope you felt momentarily drifts away like everything and everyone else.

What no one tells you - is that things don't get better - they get a tad less worse but then always return to somewhere between despair and hell.

What no one tells you - is that you start living hour by hour and each hour is a mountain to climb - you no longer hope for good days - you settle for good hours and are fearing when you look forward to good minutes.

What no one tells you - is that you will always have to scrap and beg for every single thing that you want or need or think that can save your child.

What no one tells you - is that sometimes you will just want to crawl into a fetal position and not leave your bed but you have to because you are the bloody parent.

What no one tells you - is that while you are worried about friends and family, North Korea, scary politicians, paying bills and hurricanes - that your own fear and frustration suffocates you from the inside even when you are smiling and making jokes on the outside.

What no one tells you - is that you will delay your medical appointments, your root canal and dental appointments - that you will feel so bad and tired and sick but still somehow you always are able to put that oxygen mask on everyone else but yourself.

What no one tells you - is that tomorrow morning you will get up and do it all over again - that every day is the same battle, the same ups and downs, that hope is just another false promise that you make to yourself.

What no one tells you - is that you will defend your child to everyone. That a family friend who came to dinner after church on Saturday will say - "I hope you didn't pay anything out of pocket because he is worse than ever" and you will have to argue with a 77 year old woman that she can't make judgments like that based on an hour of behavior and that you have enough negativity in your life and you don't need hers to add to the heap. Which leads to....

What no one tells you - is that everyone is an expert and they know far more than a team of doctors and psychologists at a number one rated pediatric hospital.

What no one tells you - is that you will hate yourself for writing posts like this and seem like you are a selfish, whining, ungrateful parent and while you acknowledge this the need to unburden yourself far outweighs the need to give an iota about what anyone else thinks.

What no one tells you - is that while you are denouncing hope there is a hidden part of yourself that knows that it will be better and you pray that bitch knows what she is talking about.

Broken

When Andrew was first admitted on August 11th, the doctors thought that part of the problem may be his school placement. That he couldn't function in a SED (Social Emotional Disorders) setting but also couldn't function in a typical classroom with noise and chaos. I, for one, grabbed on to that and held hard - I thought - that's it - that is what will fix my child - proper placement and a revamp of his medications. Then he would be fine - no problems, no anger, no suicide threats - just snips and snails and puppy dog tails. Our world would be right. It hasn't been right in a very long time.

He made friends - he made progress - each medication removed and added held promise - we held our breath. We've been holding our breath for a very long time.

The last weekend was rough but Monday and Tuesday - he had two great days and nights. Then as the gods got wind of our happiness - he had a horrific incident on Wednesday, where he almost kicked a child in the head - thank God the staff stopped him. He was held and fought back with the staff. Last night was rough - because he was agitated and I tried my best to stay the course - I remained calmed and used all the words and behavior I was taught over the last month - while I died a little more inside. 

He must show safe behaviors for two days before being allowed back in with his peers in the day treatment program at the hospital. When he heard that plan this morning, he became enraged and tried to turn over the table - ran out of the room, grabbed a laundry cart and started propelling it and him up and down the halls of the unit. A staff member grabbed the cart - and Andrew made a fist but didn't hit her - and I died a little more inside.

I know we have a long road - I am trying to hold onto hope but there is a little part of me that fears my broken child cannot be fixed.