A 13 Year-Old’s Holiday Plea

Milly, my 13 year-old daughter, is a very serious girl.  She always has been.  Yes, she is on the autism spectrum, but it doesn’t seem to be much of an issue anymore.  Sure, she has an IEP.  Yep.  She has a social skills class.  Of course, she thinks that it’s all a big ol’ waste of time.  She experiences the world differently.  Why do her peers preen and wear make-up and worry about their hair? Why bother impressing the boys? They are so unimpressive right now anyway according to her.  They are nothing like the totally impressive K-Pop boys of EXO and Super Junior who Eadaoin, Milly’s sister, has been more than happy to introduce us to.

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Super Junior

Milly prefers to watch Good Mythical Morning , read books, build massive LEGO structures, and watch important documentaries that make her feel “uncomfortable”, as she puts it.  She says, “Mom, I know that this is hard to watch, but I feel that it’s important for me know this because I’m a part of the world.  And, I need to know about things even if they’re hard to know.  How else will I ever be able to help?”

Something crystallized for her this morning when she saw the photos on the cover of the New York Times.

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A starving Sudanese girl in 1993 (Kevin Carter/Sygma via Getty Images)

 

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Phan Thi Kim Phuc after an accidental South Vietnamese napalm strike near Trang Bang in 1972 (Nick UL/Associated Press)

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The body of Alan Kurdi in Bodrum, Turkey (Agence France-Presse)

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5 year-old Omran Daqneesh in Aleppo in August (Mahmoud Raslan/Aleppo Media Center)

My daughter saw these images this morning as we sat in our local Caribou waiting for school to start and asked, “What…is…this? What is happening?”

I explained.  Syria.  Civil war.  The refugee crisis.  She started crying as she looked around.  She banged her fist on the table.  She then asked, “May I take this to school? I need to show my teachers.  They aren’t telling us any of this! We aren’t learning about this! Everyone talks about wanting new this and new that.  But this? I bet things would be different if my peers knew about this! I might get in trouble, Mom.  Is it okay if I get in trouble for this?”

“Knock yourself out,” I said.

She came home looking defeated.  “No one seemed to really care, Mom.  Everyone just wants stuff.  People are dying.  People have died.  I can’t live with it.  The school wants us to buy gift cards for all the staff.  What if we donated all that money to the refugees instead? Wouldn’t that do something?! I’m so angry.  I wrote this in class just to get out my feelings, but I have nowhere to put it.  I wish I could post it or something.”

“I’ll post it,” I told her.

This is what she wrote:

SCHOOL: “Shower your staff with gift cards!” NO! Donate to Syrian Refugees. YES!

Kids here want new phones.  They want new outfits and hate school.  Why wouldn’t parents educate their children about this? They’re teaching their kids to be racist and unkind (there has been racist language used in Milly’s school by other students).  There are kids in Syria who are being killed and left for vultures.  I think at least half of the kids at my school don’t know anything about this.  They say that they hate school.  Look at our school.  We have iPads! Kids in Syria would do ANYTHING to go to school, to have nice clothes, to be SAFE.  We need to do what we can to help.  Donate.  Do something.  Or at the very least learn about it to understand what’s going on and how privileged we are.  We need to make a change.  Our school wants us to “shower our staff with gift cards”.  Why do that when we could help people who need it? Children are struck with terror running for their lives and being publicly humiliated.  And our school wants us to donate gift cards to the staff.  Our staff already has homes, clothes, food.  We should be giving our money not to our staff but to help Syrian refugees who need it.

Donald J. Trump doesn’t want to help them.  He says that “they will steal our jobs”.  They don’t want to steal our jobs.  They just want to be safe and to survive.  We should be letting them into our country and we should help.  Our country should create more jobs and that would help the economy grow.  Kids say that immigrants are bad and that they will take our jobs.  They say these things because this is what they were taught.  We need to make a change, to be kind, and help other people who are less fortunate than we are.

The 7th grade Social Studies curriculum is ridiculous because there is no current events taught.  Instead we learn about the Bill of Rights, the Constitution, and the presidents which are all important, but we could at least talk about what’s going on a little bit.  That’s why it’s up to us, the students, to make a change.  Before today, I barely knew anything about what’s going on in Syria.  No thanks to our school who didn’t teach us anything about what’s happening there.  Today I looked at the New York Times and was shocked to find out what is happening.  In school we are supposed to learn.  It doesn’t have to be a part of our curriculum.  If more kids learn about what is happening, the more help Syrians could get.  So, do your part.”

Strong opinions from a strong-minded girl, but she’s a girl of action.  She asked me to forgo giving her this month’s allowance and donate it instead.  She also asked me not to spend any money on gifts for her this holiday season.  Instead, she wanted any money I spent on her to go to the Syrian refugees.  She didn’t need anything.

All politics aside, she is right.  If we have more than we need, then we are blessed.  Stop for a moment and think about what you might be able to do.  Donate $10? Do it then.  Millions of human beings have been displaced.  They have lost everything.  They are no different from you and me.  It is our obligation as human beings first, all other views and opinions second, to come alongside them and help.  As Milly said, “Do your part.”

This is how you can:

The White Helmets Hero Fund

The White Helmets captured international attention through their bravery, and were reportedly in the running for the Nobel Peace Prize earlier this year. The 2,900 strong group of civilians have been carrying out rescue missions after government airstrikes since 2013, united by their motto of ‘to save one life, is to save all of humanity’.

The International Rescue Committee

IRC aid workers are meeting people who have fled Aleppo as they reach the nearby town of Al Dana, one of the many neighboring areas bracing themselves for the influx of displaced people driven from their homes in the city. Donations will go toward providing families who have escaped the city with food, fuel and emergency supplies including mattresses, blankets, soap and towels.

Hand in Hand for Syria

Hand in Hand for Syria was set up soon after the beginning of the war in 2011, and uses its extensive networks on the ground to implement aid in some of the most difficult-to-reach places. Some of the organization’s members living in Eastern Aleppo were forced to abandon their work after pro-government forces took control of the area. Donors can contribute toward the emergency appeal for families fleeing from the city, which will provide food, medical aid and winter supplies.

International Committee of the Red Cross

The ICRC and its local partner, the Syrian Arab Red Crescent (SARC), have remained committed “to act as a neutral and impartial humanitarian intermediary” throughout the Syrian Civil War. Donations to the Red Cross and the Red Crescent have enabled food and medical deliveries to those in need, and the two groups issued a plea on Tuesday to those involved in fighting “to put humanity ahead of military objectives.”

Save the Children

Save the Children has been working to provide children and their families with warm clothes, shelters, protection, clean water and emergency care. In a statement on Tuesday, the charity said “Families who are desperate to leave are being shown no dignity or humanity. We must at least now end this carnage and safely evacuate the remaining civilians.” (courtesy of TIME)

Milly’s originally penned Letter to Everyone

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Was Dr. Phil Doing His Job?

I’ll get right to it.

Dr.Phil.  What are the prevailing opinions regarding Dr. P? I have never watched his show, but I don’t live under a rock either.  It’s hard not to be aware of his no nonsense, shoot from the hip, straight talk.  Americans love gossip and drama, and they love reality television.  It’s like red meat and red wine.

“And tonight we will be having a titillating show in which Tom is caught redhanded! We will pair that with high drama best exemplified by Martha’s throwing her drink in his face, and her ex-best friend will see this and tweet about it causing the entire bridge club of the White Haven Bridge Society to stop drinking their gin and tonics for five minutes !”

Dr. Phil has made his name and money on the backs of people’s pain and misfortune.  They have agreed to it by appearing on his show and airing their dirty laundry in front of America.  I suspect that people feel better about their lives by partaking of the hidden miseries of the lives of others.  Dr. Phil has been more than happy to oblige them.

This latest show, however, has me asking questions, and I don’t know the answers.

Dr. Phil has interviewed actress Shelley Duvall most well-known for her roles in The Shining and Popeye.  She has been out of the spotlight for almost 20 years, and this is the first time she has been seen.  Duvall is mentally ill with what looks to be a psychotic disorder or dementia.  To be honest, she speaks like and has the affect of someone with a schizophrenia spectrum disorder.

 

Dr. Phil is under heavy fire from certain people in Hollywood for this interview and receiving press attention, too.  Is he doing this for ratings and, thusly, exploiting Duvall, or is he merely trying to help Duvall? I’m not sure.

Mental illness is no different than any other kind of illness in terms of the body experiencing disease.  There are many contributing factors.  In the case of a schizophrenia spectrum disorder, it is, like MS, a neurodegenerative disease.  The illness itself is a manifestation of a brain-based, neurological disease.

Were people all up in arms when Michael J. Fox was being interviewed, his Parkinson’s Disease symptoms on full display? What about the countless documentaries on early-onset Alzheimer’s? How many interviews have been done with people experiencing dementia? Were people protesting then claiming exploitation and cruelty? No.  What about news programs and documentaries featuring cancer patients in the throes of treatment manifesting symptoms of “chemo brain”? No one was tweeting that the directors were cruel and exploitative then.

So, what about this particular interview is pushing buttons? Duvall herself admits to needing help.  She says, “I’m sick.  I need help.”  She also answers questions that clearly reveal positive symptoms elucidating some kind of underlying psychosis.  It’s upsetting to watch.  But what if psychosis weren’t stigmatized in our society?

What if psychosis were viewed as an indicator of a disease process in the brain, and everyone knew that.  People would then see this interview and say, “Oh my.  Ms. Duvall needs a medical intervention.  I feel sad that she is ill now,” instead of reeling back in horror.  You see, I don’t think that the root of people’s outrage over this interview is related to Dr. Phil’s tendency to ride the coattails of people’s misfortune.  If everyone were authentically outraged over this, then more letters to the press would have been written sooner.  Nothing that Dr. Phil is doing is new.  He’s the same misery vampire as ever, and the American people have loved it.  His show is still on the air.  It’s in its 14th season.

I carefully submit that people are horrified by Ms. Duvall and the manifestation of her illness.  It’s shocking.  It is abnormal, and no one wants to see it.  My question is this: How is mental illness to ever be normalized as part of the human experience unless people with negative, positive, and cognitive symptoms are introduced to people who are not acquainted with them? Mental illness is so stigmatized in our world.  It is hidden and shamed.  Few people outside of the reality of it want to talk about it in meaningful ways, and, when it is discussed and put out there bluntly, those with it are pitied or referred to as undignified.  That is actually the perpetuation of stigma.

Americans are very comfortable with mockery and making that which is quotidian and quite normal profane.  Disease in America is the norm.  It has become normal, and mental illness is normal as well because it is a disease process; but most Americans distance themselves from it through objectification and mockery.  How many Halloween costumes involve mocking those with mental illness–straight jackets, references to mental illness in the costumes themselves, and movie and comic book characters who are anti-heroes due to a mental illness e.g. The Suicide Squad.  It is an hyberbolic surreality that proliferates due to distancing behaviors rooted in stigma and fear.

What Dr. Phil is doing, while distasteful, may not be a bad thing.  The only thing that I might question is Ms. Duvall’s agency, and this is where dignity and potential exploitation come into play.  When we lose our agency to a disease, our dignity becomes dependent upon our caregivers.  Was Ms. Duvall acting on her own behalf, or was someone else acting on her behalf when the agreement was made to do this interview? Was her fundamental right to privacy violated by someone else acting as her power of attorney?

At the same time, do people ask these questions of other people manifesting diseases who participate in interviews? If not, then why? Why is there a double standard? Once again, I think that it may be due to the lack of societal normalization of mental illness perpetuated by stigma.  Someone has to go first and show the world what it looks like–and not in a movie for the purpose of entertainment.  Then, someone must go second, third, fourth, etc.  The world must get comfortable with what it has always chosen to hide and avoid.

Why? 75% of Americans will, at some point, require help for mental illness of some kind.  That would probably be a smaller number if 100% of Americans were willing to support them.

Further Reading:

Exploitative or Empowering? Dr. Phil’s Interview with Shelley Duvall Sparks Controversy

Mental Health and Hormones

This might be an odd topic to discuss, but it’s actually very important in terms of adolescent mental health particularly if there is a biologically-based brain disorder on the table.

What happens when puberty strikes?

Let me get this off my chest.  I hate the word ‘puberty’.  I don’t know why.  It’s a weird word, isn’t it? I don’t even like to say it aloud.  “Puuuuuuuuuberty.”  No.  Just…no.

What else can I call it? Game Day? The Dawn of a New Age? Rites of Passage? Pledge Week? These all sound like terrible movies, cults, or something that happens to you at a Greek Week event.  But, isn’t that what puberty feels like? I digress…

Everyone warned me that puberty would be an über nightmare for Grace as opposed to the standard nightmare that the neurotypical folks experience because the sudden surge in hormones might possibly increase the intensity of her diagnosis–schizophrenia spectrum disorder.  I winced.  It is a valid concern because onset of puberty is often the time when schizophrenia and bipolar spectrum disorders emerge.  If you have a child who has a childhood-onset diagnosis, then what might puberty change or exacerbate?

So, how has it been?

Well, the first thing to note here is that Grace has been taking Abilify since she was 11 years-old, and Abilify affected her sexual development.  She didn’t experience any signs of puberty until she was well into her 15th year.  That’s late.  It was concerning.  We were almost referred to an endocrinologist.

The second thing to note is that her symptoms were in no way exacerbated by her diagnosis.  She was a very typical teenager if ‘typical’ is a thing.  In other words, her behavior and thoughts were well within the bell curve for what I would define as normative although she has favored emo-angsty self-expression for about a year.  It’s like living with a character from a knock-off John Hughes movie.  The month prior to menarche (another word that should never be used), however, she became an asshole, and no one knew why.

Also, she wanted to snort and mainline sugar.  I had to practically build a wall between her and the kitchen just to keep her away from anything potentially sugary–even granulated sugar! She hated everything as well.  She was rude.  She wanted to be left alone.  Everything was bad.  And, she cried all the time.  She is my third daughter.  I’ve seen all this before but not quite at this level.  A friend commented, “Wow, she just hates everything.”

Well, when her first period arrived, it all crystallized, and her mood cleared up.  It’s damn hard being a girl.

We did not, however, have any psychotic symptoms.  We did not have a surge in mania.  It was fairly typical.  Everyone in the house gets a bit moody and upset as their hormones ebb and flow.  Doireann cries.  Eadaoin gets punchy.  Grace hates everyone and everything.  I feel irritable.  It is life.  You learn to go with the flow (sorry about the pun…).

The good news? There was no apocalypse, and that means a lot because more than a few people prognosticated the end of the world for Grace when Shark Week hit.

So, should you be in a similar situation, wondering how your child will do when the surge of hormones bathes their brain in all the colors of the moody, developmental rainbow, have hope.  Sometimes things go smoothly and everything works out.

Just as you hoped it would.

 

 

Making David Sedaris Proud

It’s been a year since the girls and I have lived together sans their father here.  He moved out a year ago.  Last year was a year in transition to say the least, but everyone is emerging in very good shape.  In better shape.

Personalities are revealing themselves in ways that may not have been permitted before.  As a parent, it’s reassuring to see.  As another human being who lives here, in the fray with a 13 year-old, an almost 16 year-old, and an almost 18 year-old, I find it extremely entertaining (yeah, Grace is almost 16!).

A few weeks ago, one of our family pets, Q the parakeet, died suddenly as in he literally keeled over.  Q was a very interactive bird.  He was very loud and screechy (a trait Doireann in particular disliked), but it’s because he loved attention.  Eadaoin loved him.  She had picked him out to be her bird.

On the night he died, I recall talking to him before I showered.  As soon as I opened the bathroom door wearing nothing but a towel, Milly approached me and whispered, “Mom, look at Q.”  I immediately felt dread.  I approached his cage and looked for Q.  He was lying on the bottom of the cage in a contorted pose, his wing entangled in the cage bars.

“Oh my god, what happened?! Is he alive? I just saw him a few minutes ago!” I shouted.

I reached into his cage to try to remove him, and I found that his feet had grasped onto the bottom of the cage which prevented me from removing him.  I had to undo his tiny grip, and it wasn’t easy.  Each little birdy toe was interlaced within the slats of the bottom of the cage.   I kept thinking, “How am I going to get him out of this cage without breaking his feet?”

Milly and Grace were hovering around me and the cage at this point.

“Is he alive? Is he alive? He can’t be dead! Eadaoin will be so upset.  Oh no…” Milly repeated.

I tried to reassure them, but I was fairly certain Q had died.  It looked like he had suffered a seizure based upon the final pose of his body.  I was having a helluva time removing him from his cage, and I noticed that my towel was slipping.

“Maybe he’s alive! Maybe he’s alive!” Milly suggested hopefully.

“Honey, I think he has probably died,” I finally said with both my hands still in the cage.

Grace was wringing her hands and trying not to cry.  My towel was going to fall off.

“What if he’s really alive?” Milly asked.

“He’s not alive,” Grace answered rather emphatically.

“He could be!” she countered.

“Look at him! He’s lifeless.  He’s dead, Milly!” Grace shouted to match Milly’s energy.

“He could be…you know…in one of those…what are they called?” Milly stammered.

“A coma?!” I answered, shocked, momentarily distracted from trying to get poor Q out of his cage.

“Oh my god, Milly, the bird doesn’t have locked-in syndrome! What in the world…he’s dead!” Grace said very pointedly.

“Well, I can hope, right?” Milly retorted, her fists balled up by her side.

“No, you can’t! You can’t hope for something to be in a coma when it’s died! That’s ridiculous…”

Interrupting the banter, I all but yelled out, “Hey! Eadaoin’s bird has died here! Stop it! And my towel is going to fall off.  Help me!”

That’s the moment I paused everything in my mind.  I observed the scenario.  Both my hands are in a bird cage while I stand almost naked, dripping wet, handling a dead parakeet while my daughters are literally yelling at each other over the possibility of our obviously dead bird having locked-in syndrome.  It was absurd.

I was eventually able to remove Q from his cage.  He had, in fact, died.  There was no doubt about it.  Everyone held him, and Milly spoke words of kindness to him as she held him: “You were always a loud bird, but we loved you.”

Eadaoin was predictably heartbroken.  She told me that she didn’t want to even see him, but, upon my suggestion that it would help her mourn him, she held him anyway.  Then, in a scene of sweet sadness, she pet his face and held him next to her heart.

Milly found a box, gently placed Q in it, and announced that she wanted to bury him in our backyard.  She also announced that she wanted to do it alone.  Eadaoin was too sad to be at his funeral, and I told Milly that I didn’t mind if she did it alone.  I could hear her singing a song to him from the kitchen.  I half expected to hear “Taps”.  She is a very serious girl.

I began to feel melancholy in observing everyone’s grief for their deceased pet.  I was sad, too, that he had died.  Milly came inside after burying Q, washed her hands, and leaned against the counter.  She looked thoughtful.

“Are you okay?” I asked.

She nodded and bit her lip.

I felt myself become anxious.  Maybe I should not have honored her request.  Did I make a bad decision? I don’t always know the right things to do.  Parenting is damn hard.

“Mom…” Milly asked tentatively.

“Yes?” I replied hesitantly afraid of what she was going to ask me.

“You’re sure that he’s dead, right?” Milly asked.

Suddenly, a loud shout from the living room boomed throughout the house.

“Oh my god! He doesn’t have locked-in syndrome! He’s dead!!!!!”

Breathing out a sigh of relief, I quietly laughed.  Yeah, everyone is okay.  Everything is fine.

 

 

Marriage and Caregiving Can Go Together

When I got married, I did not expect to get divorced.  That is probably what every divorced person says.  It’s almost funny.  It’s funny because it’s true.  I expected it to be hard.  I expected it to even be an ordeal at times.  I also expected it to be good.

So, what went wrong?

I don’t have any divorced friends.  I am the black sheep within my social circle now.  I’m also very private by nature so only a select few know the real truth behind my divorce–the reasons I ended it.

Domestic abuse.

I’ve been silent for a while on this blog because I’ve been active elsewhere, documenting the entire process.  It’s kept me sane.

That’s not what I’m here to discuss though.  I’m here to talk about how caring for children with special needs and/or disabilities can and will impact your marriage.  How it will distill your personalities and reveal the flaws and what you can do about it so that you become better, not run over in the process of caregiving.

My marriage was never great.  That should be stated.  It wasn’t even good.  It was middling.  We should never have had children together, and I don’t mean that in a regretful way.  What I mean is that children should be born into a family where they are equally desired by both parents.  In retrospect, I don’t think he wanted them or knew what it meant to be a father.  A good father anyway.  He was the distant, uninvolved father who worked, brought home the paycheck, and involved himself with them at his convenience.  He was Generation X’s Don Draper.

He also rarely involved himself with me in meaningful ways.  One of his favorite ways to spend time was sitting in bed together, parallel reading.  I had something different in mind when it came to spending time in bed together, but he was not generally up for that–unless I wasn’t.  Then suddenly he was.  There were always games afoot.  Psychological warfare.  These games made him the victim in our relationship and in his life.  I didn’t see it until our youngest daughter was born.

Milly was our first daughter to be diagnosed with anything.  She was diagnosed with an autism spectrum disorder and anxiety along with sensory processing disorder at 4 years-old.  She, however, came into this world an overwhelmed mess.  She did not sleep as an infant or toddler which meant that I didn’t sleep.  I was diagnosed with chronic migraine disease and fibromyalgia a little before her diagnosis all due to four years of sleep deprivation and the strain of caring for a young child with some kind of undiagnosed disorder.  That was when I started getting sick.  That was also when he started hiding–running away from parental responsibilities.  In the midst of my search for answers as to why our daughter screamed constantly, he yelled at me, saying, “You just want something to be wrong with her!”

Pause and observe this.  This is denial, and this is a common reaction in couples.  One person in the coupling usually denies or minimizes the child’s “issues” and, statistically speaking, it’s usually the father.  I don’t know why.  It’s a frightening proposition to be faced with.  A sick child.  The “what if” script starts: “What if…what if…what if…”  A natural response might be to run away and pretend that nothing is wrong.  Another reaction is to blame the partner.  They might be doing something to make the child behave that way.  Is it the day care? Is it the in-laws? Is it your faulty genetics? Blame comes on the heels of denial, but blame is simply the emission of anger and emotional discomfort aimed at a target.  We all do it.

It is in this moment, however, when those first wedges are driven into relationships.  When one parent is seeking answers to help a potentially sick child while the other denies and shifts the blame.  This is what sets the stage for marital discord down the road.  Why? It erodes trust, and trust is the currency in all relationships.  In close relationships, I have to know that you have my back, and you must know that I have yours.  When your child is potentially ill and in need of help, that is the moment to come together and share fears.  So when one partner uses the other for target practice, that is a betrayal of that most sacred trust.  It is a form of abandonment within the relationship not to mention one partner has just left the other partner to figure out the problems all on their own.  The relationship was temporarily sacrificed as a coping strategy.

What happens from there? The abandoned partner usually begins remembering all the other times they were abandoned by their mate.  It’s a gestalt experience.  And the seeds of discord have not only been sown but are now being fertilized.  Depending upon emotional maturity, character development, and past issues with one’s family of origin, a person can either get past this or not.  I’ve seen this dynamic play out within other relationships wherein there were children in the middle of receiving a diagnosis, and it definitely played out within my own marriage.  It was a devastating experience.  As the primary caregiver, it caused feelings of isolation, anxiety, and fear, and I didn’t know who to turn to.  My spouse wasn’t on the list because he removed himself.  As far as he was concerned, his kid was fine, and, if his kid was fine, then I was fine, too.

Then, Grace got sick.  There’s nothing like a psychotic episode to wake a person from their oblivious slumber.  His denial reigned supreme.  Wash, rinse, repeat.

Eadaoin hit puberty and bipolar disorder came to the surface.  It was like someone signed us up for some kind of nightmare roller coaster ride, and we couldn’t get off.  I was barely holding it together, and I kept looking to him for some kind of support.  Anything.  He just locked himself away in our bedroom which he had turned into his office.  I had nowhere to go.  I thought that if we could maintain some kind of connection–any kind–maybe we could rely on each other for something.  I pushed for sexual connection.  That’s when the worst of the domestic abuse started.  Clearly, he didn’t want to be involved in anything.  We were on our own.

A year after I had corrective surgery on a hip injury he caused I called it: “I think it’s over.”

He agreed.

So, what is to be learned here?

  1. Always put on your oxygen mask first.  What does this mean? Tend to your stuff! If that means going to therapy, then go.  If that means going to the doctor for a physical, then go.  If that means joining a gym and getting in shape, then go.  If that means changing jobs, then do it.  There is only one you, and, if you are a caregiver, then someone really needs you.  Take care of yourself so that you can be present.  More than that, if you are in a long-term relationship, then be the person who you would want to be in a relationship with.  I can’t emphasize that point enough.  Someone chose you.  They met you, liked you, and then fell in love.  With you.  They decided that they wanted to spend their life with you.  That’s a very big deal.  Never forget that they can always change their mind should you suddenly become a total dick.  I’m being frank here because it needs to be said.  We must always be developing our character and maturing our personality as well as taking care of our bodies so that we can rise to the circumstances that life throws our way.  This is why you must, must, must make your health, well-being, and ontological state a priority.
  2. Assess the state of your relationships.  Doing a survey of how you are doing in your relationships is key to developing your character as well as addressing bad habits that naturally develop over time.  Are you known for anything in particular by your friends and family? Are you the person who loses their temper? Well, get on that.  It’s time to be known for something better.  Are you always late? For everything? Develop your empathy and address that shortcoming.  Doing an honest personal inventory of who you are now vs. who you would like to be is a courageous and valuable thing to do.  It sets a course and provides a spark of momentum.  It’s intentional and says to the important people in your life, “You matter to me.  I know that I affect you.  I want to do better by being better.”
  3. Make amends.  This is a hard one, but it goes a long way.  Talk to the people in your life.  Had my ex-husband and I actually discussed past hurts in a meaningful way and combined them with a plan to heal the wounds (this is accountability), there might be less pain today.  He was never able to engage me in any kind of emotional discussion.  Nothing was ever addressed.  So, I was never able to hold him accountable for anything.  In the end, I was blamed for my own abuse.
  4. Grow up.  I know many people who hold onto childhood dreams of what family and marriage should look like.  They insist on keeping certain traditions alive because they find it personally fulfilling, but it hurts their family relationships.  When you have children with special needs, nothing in your life will ever be all-or-nothing again.  Everything will become about compromising, and you will take the hits.  This will feel painful to you.  I guarantee that.  You will have a moment, at least one, when you step back and look at the landscape of your life, and it will feel utterly unfamiliar to you.  This feeling of depersonalization often ushers in the experience of grief.  It’s at this moment when you feel just how hard it all is.  How much you have lost.  Just be honest with yourself and let it flow.  It’s okay.  You can see the good in the child or children you love while feeling hurt and betrayed at the same time.  That’s the dialectic of caregiving.
  5. Do a proper grief work.  If you do a proper grief work together, sharing your experiences with each other, then you will grow closer.  Ordeal is one of the best bonding experiences.  My ex-husband never went to the hospital with Grace and me.  He never went to an appointment.  He never went to the Behavioral Health ER either.  You know who did? Girlfriends.  Do you know who I am close to now? Girlfriends.  My girlfriends and I remember those early days of the disease onset, and we can even laugh about it as macabre as that sounds.  We were scared together.  They loved Grace, too.  So, I grieved with them instead of with my husband since he never left the bedroom.
  6. Stick together.  Above all, be a couple.  You were together before you had children.  Don’t ever forget that.  Find at least one thing that makes you feel connected and commit yourselves to it.  Never give that up.  If it’s sex, then have sex often.  If it’s hiking, then hike as often as you can.  If it’s watching sports together or playing sports together, then get out there and do it.  Protect your relationship fiercely.  Do not let in-laws tread upon it no matter how well-meaning they are.  This is your relationship.  Make it the number one priority in your life.  Even above your kids.

This is what I have learned after nineteen and half years of marriage and nine months of separation with a pending divorce.  I have never been someone to look to statistics for answers.  Of course, now I am a statistic.  You don’t have to be.

A Supplement Worth Trying

I wanted to write a follow-up to my last post on this complementary migraine treatment:

So, does it work? In a word, yes.  There is a reason that German physicians prescribe butterbur and feverfew to migraineurs.  It is effective.  Where have I seen its effectiveness the most thus far? Premenstrual migraines.

I take three prescription medications to prophylactically manage migraines.  I have three T2 lesions on my brain resulting from twelve years of almost unmanageable migraines.  I saw another doctor yesterday about migraine management, and he said, “You are doing everything imaginable nutritionally to try to prevent and heal yourself from migraines.”

I am not fooling around.

Enter butterbur and feverfew with niacin.  Would it work?

This treatment typically takes a month to be effective.  I’ve been using it for less than one month.  This month, however, I did not experience the premenstrual migraine phenomenon which always happens.  No matter what I do, I can’t seem to prevent them, and those events are painful in a special way.  They have a different flavor (and yes, I know about estrogen dominance).

So, anecdotally, I can confirm, along with a good portion of the European medical  community, that butterbur and feverfew work! The supplement that I recommend is Preventa.  The company even sends you a migraine calendar to chart your migraines.

If you struggle with migraines and would like to try an alternative treatment or augment your current one, give this a go.  I’m seeing good results, and, coming from me, that is a dramatic statement.

 

Complementary Treatments for Migraine

I’ve written here before about migraines.  Grace was plagued by migraines during the prodromal phase of the disease onset (that feels like a redundancy).  Migraines are the bane of my existence.  My neurologist jumps through whatever hoops neurologists jump through in order to try to keep mine in check.  I have a “migraineur’s brain” meaning that I have T2 lesions on my brain that show up on an MRI.  Migraines cause lesions on the brain.  Scary thought.  Neurologists call it “scar tissue”.  I don’t know about you, but I don’t want scar tissue on my brain.  I don’t want Grace having scar tissue on her brain.

What can we migraineurs do about it?

I’m on a shit ton of medication which works prophylactically to prevent migraines, and, even though I still get them, it works 50% of the time in a bad month when stress is sky high and 75% when life is holding.  That’s not bad.

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Could it be better? Sh’yeah!

I have reached a somewhat desperate state.  I went to the emergency room at 2 AM this morning because my migraine was beyond self-help.  It was at a 9 or 10 on the pain scale, and, once the barfing starts, it won’t stop.  The good people of my local ER were on it, and I was home by 5:30 AM sans any pain at all.

This is no way to live.  So, if you live with chronic migraine disease, what can you do? My neurologist puts me on prednisone from time to time in an attempt to arrest a migraine that might feel like sticking around.  That didn’t work this time.  I’m on prednisone now, and that is not a drug one wants to be on.  Side effects, anyone?

Let’s talk about an alternative treatment.  Butterbur and feverfew.

In 2012, the American Academy of Neurology (AAN) updated its guidelines on migraine prevention to include complementary treatments. Based on reviews of clinical studies, the AAN recommends:

  • Butterbur (Petasites hybridus). Butterbur is a traditional herbal remedy used for many types of ailments, including migraine. The AAN considers butterbur “effective” and recommends it be offered for migraine prevention. Butterbur was the only non-drug treatment ranked by the AAN as having the highest proof of evidence (Level A) for effectiveness. Butterbur may cause an allergic reaction in people who are sensitive to ragweed and related plants.
  • Feverfew. Feverfew is another well-studied herbal remedy for headaches. The AAN ranks feverfew as “probably effective” (Level B evidence) and recommends that it be considered for migraine prevention. Pregnant women should not take this herb as it may potentially harm the fetus.
  • Riboflavin (Vitamin B2) and Magnesium. Riboflavin and magnesium are the two vitamin and mineral supplments ranked by the AAN as “probably effective”. Vitamin B2 is generally safe, although some people taking high doses develop diarrhea. Magnesium helps relax blood vessels. Some studies have reported a higher rate of magnesium deficiencies in some patients with migraine..

German doctors have been using butterbur as a prophylactic treatment for migraine with great success since the 1980s.  It is a widely recommended and known treatment in Germany and other European countries.  My neurologist may not know about this nor has she recommended magnesium to me.  She has recommended vitamin D due to low vitamin D levels being linked to inflammation.

The thing to note about butterbur is a pesky alkaloid that is toxic to your liver–pyrrolizidine alkaloids.  They are indicated on butterbur supplements as PA, and all butterbur supplements should say “PA-free”.  I note this because there was a change in a German company’s manufacturing process a few years ago, and their butterbur supplement, Petadolex, suddenly became contaminated with those pesky alkaloids.  A review and subsequent testing of the supplement revealed that the hepatoxic alkaloid compounds were still present in the supplement, and Germany removed the supplement from the market; Switzerland banned the sale of all butterbur supplements altogether.  There are, however, other companies that produce butterbur supplements other than Weber and Weber, the German-based company who failed the investigation.  Oddly enough, you can still buy Weber and Weber’s butterbur supplement on Amazon, so beware.

This is a case of throwing out the baby with the bathwater (Switzerland, I am talking to you).  Everyone in the know is aware of hepatoxic alkaloids in butterbur.  Why the American Headache Society is attempting to formulate a stance on it is beyond me unless it just doesn’t want anyone taking butterbur at all to prevent litigious action.  In the end, you need to be smart.  If our doctors have us taking a plethora of drugs in an attempt to manage our pain, then why not look at butterbur as well? Have you read the side effects of these anticonvulsants, steroids, and triptans? Nothing is very good here.

In the meantime, here is an excellent butterbur supplement that is PA-free and also contains feverfew and magnesium.  It’s wheat-free, gluten-free, and even vegetarian.

Do some research for yourself if you struggle with migraines.  There are complementary treatments.  Sometimes we have to be the ones to find them.

Further Reading:

Preventing Migraine Pain with Butterbur (great article)

Migraine Preventative Butterbur has Safety Concerns