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.

Developing Distress Tolerance

One of the core principles of DBT is mindfulness.  Mindfulness has suddenly gained momentum in our culture.  It made the cover of TIME magazine.  It sounds like an Eastern principle or out-of-reach way of life.  To me, it sounds like something that one of my husband’s friends would pursue back in the day.  My husband had a friend who fancied himself a writer.  I don’t mean that he wanted to write.  I mean that he wanted to cultivate a rarefied writer persona in which he grew out his hair, never shaved, drank scotch, started smoking, and talked about himself.  A lot.  He began wearing black turtlenecks and refusing to read genre fiction anymore.  When I hear the word ‘mindfulness’, I imagine my husband’s friend taking a drag on one of his filterless cigarettes, exhaling, and then saying, “I’ve decided that I need to go out into the desert to become more mindful.  Perhaps I will bring my Dostoyevsky and my typewriter…and an extra turtleneck.”

Incidentally, he did finally write a novel and self-publish it.  It was one of the worst novels I’ve ever tried to read.  He went back to being a programmer.  Oh, and he started bathing again.

So, what is mindfulness? I’m going to define it quite simply.  Mindfulness is being present.  That is as simple as I can put it.  I can almost hear a crowd of people say, “What? That’s it? Well, that’s easy.”  Not so fast.

To be truly present in each moment means that you do not try to escape whatever is happening around you, to you, or within you.  It means that you stay put and become an observer of your surroundings, others, yourself, your bodily sensations, your thoughts, and your own responses to all the above.  This requires distress tolerance, and it is the level of distress tolerance that a person has that, in my experience, determines how mindful they can be.

Let me give you an example from the adult experience:

Bob and Anne are married.  Anne is 8 months pregnant with twins.  Anne has been on bed rest for almost the entirety of her pregnancy due to complications brought on by hyperemesis gravidarum.  For Bob, this has meant no sexy times.  For 8 months.  Bob is about to lose it.  He thinks about sex all the time.  He misses his wife.  He misses what their lives used to feel like.  He wants to have sex.  He feels like he needs to have sex.  He’s pretty sure that he can’t take another second of feeling this sexually amped up.  He would ask her for oral sex, but he doesn’t want to make her throw up.  He’s been watching her suffer, feeling helpless, so that her body can bring their two beautiful babies into the world.  He doesn’t want to add to that.  What about manual stimulation? She’s so weak and completely uninterested! He doesn’t want to be that guy.  He loves her! But, he’s going crazy! He hates feeling like this.  Sex, sex, sex, sex.  That’s all he thinks about now.  Not the babies.  And he feels guilty.  And horny.  All the damn time.  He wants to get away from himself.

Welcome to adulthood.  It sucks, doesn’t it? This is a very realistic picture of the Mindfulness Crossroads.  Bob could look for a short-term exit strategy to avoid feeling as he does, or he could develop distress tolerance which would develop emotional maturity, empathy, and a stronger relationship with his wife.  Make no mistake.  It is very hard.  This is why mindfulness sounds like a pretty word but can feel almost impossible in the moment.  It’s the distress tolerance factor.

In cases like Bob’s, porn would be the go-to imaginary partner/exit strategy.  It’s a quick shot of anesthesia in the moment, but, after it wears off, Bob is right back where he started.  It’s certainly understandable.  Bob, however, would not develop the distress tolerance to get in there, neck deep with his wife and ride out what is sure to be one of the hardest things she’s ever endured as well.  Ordeal is a powerful experience that forges lasting bonds between people particularly partners.  It takes a great deal of mettle to volunteer to stay in the ordeal experience when there are so many exits available through cultural distraction like pornography, endless entertainment options, the legitimacy and worship of busyness, consumption, and the cultural acceptance of personal entitlement at the expense of others in the name of the pursuit of happiness and personal comfort.  The development of distress tolerance so that we can learn to stay present and aware of our own changing inner climate, be present for others, and develop interpersonal skills that will cultivate stronger bonds be they in personal or professional relationships is not an idea that is promoted, but it’s impossible to develop mindfulness without it.

Learning to increase our tolerance for distress so that we can be mindful is probably one of the best things we can do for ourselves not to mention one of the best things we can teach our children.  We might start feeling like we can’t deal with certain things at all.  I used to feel this way about my mother.  I had zero distress tolerance for her or for anyone who behaved like her.  Over the years, I have learned to tolerate behaviors that remind me of her.  What’s more, I can stay present to myself and my surroundings when I’m with someone who decides to channel Joan Crawford’s Mommy Dearest.  I have developed distress tolerance.

We are teaching Grace to develop distress tolerance.  It’s a process made up of baby steps, but it’s an important process.  She will like herself more and more when she knows that she can tolerate and even do well under pressure.  She may not be able to tolerate as much distress as others, but she can learn to tolerate more as she matures.  This is not an accidental process.  It’s deliberate.  That is the choice set before all of us.  For me, when I’m experiencing a feeling that I strongly dislike like rejection or emotional pain, I will sit with it for at least five minutes.  I will not compartmentalize it or try to escape it.  I will practice tolerating the pain.  Please note the word ‘practice’ here.  Mindfulness is a practice.  We practice observing the thoughts that are floating through our minds without judging them.  We practice paying attention to our feelings.  We practice observing our environments.  We practice staying present to our feelings no matter how uncomfortable.  When we’ve had enough, when we’ve stretched ourselves as far as we can, then we stop practicing.  This is how you increase your mindfulness endurance.

I want to refer you to a resource.  It’s a curriculum called Mind UP.  It teaches mindfulness combined with neuroscience to children and teens.  DBT shows up in there as well.  I have a friend who is using this curriculum at home with her daughter, and it’s proving to be very successful.  I am going to implement this with Grace, Eadaoin, and Milly.  Distress tolerance is something that we will continue to talk about as we continue our mindfulness journey.  Life doesn’t get any easier as we grow.  We need to add to our toolboxes so that we’re successful both personally and professionally.

Resources:

The MindUP Curriculum: Grades 6-8

The MindUP Curriculum: Grades 3-5

Using Your Blue Mind

 

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I came across this book while reading a recent issue of Psychology Today.  By the way, Psychology Today is a great magazine.  You might not agree with everything going on in modern psychology, but there is usually a gem in every issue–even a tiny one.  Like this book recommendation.

The Washington Post reviewed it recently, and the last time I checked it was #12 on the New York Times list of best selling science books.  Not too shabby.  So, what did the Post have to say about Nichols’ book?

““Blue Mind” is a fascinating study of the emotional, behavioral, psychological and physical connections that keep humans so enchanted with water. Nichols examines seas and oceans, lakes and rivers, even swimming pools and the contents of our bathtubs in a study that is both highly readable and rooted in real research. He is a marine biologist whose passion for our planet’s water goes far beyond the classroom. He urges us to get closer to water, not only for our own sake but for the environment and a healthier future for us all. The blue mind of the book’s title refers to the neurological, psychological and emotional changes our brains experience when we are close to water. Nichols draws on science and art, hard data and anecdote, and plenty of experience, to explain our blue mind in detail. Not just what it is, but how we can enter into this state and — perhaps most important — why we should do so…The benefits of nurturing our blue mind go beyond just feeling good. Our blue mind is up against two other common states, as Nichols explains: red mind (stressed, anxious, overactive yet underproductive) and gray mind (numb, lethargic, demotivated and unsatisfied). Red and gray mind states are products of our modern lifestyles, habits and choices. Blue mind is a natural state that we all instinctively know but that many of us have forgotten…Ultimately, Nichols suggests that being close to water can make us not only happier, calmer and more emotionally healthy, but also more successful in life, relationships and even business. By tapping into an evolutionary urge that lies dormant in us all, we can access a powerful mental capacity for greatness. It’s something we all have the ability to do. This book shows us how to recognize it, stop ignoring it and tune in to it.” (Nicola Joyce, Washington Post)

Well, that’s interesting.  I grew up near water.  I have always lived near water.  I have always said that I could not live in a place where there was no water, and I never have.  I was even a competitive swimmer.  I can relate to the points raised in this book.  But, I wanted to make this premise more accessible.  I live in lake country, and living on and around lakes defines the culture of my state.  Many people live with lakes in their backyards.  We are not those people.   We live in an urban environment.  How could I bring the water here? Macro to micro as it were?

I decided to pick a place of high conflict in our house and add a source of water–the dining room table.  Everyone gathers at the dining room table to do homework, crafts, and eat.  It’s the place to be, and it’s the place to be contrary and persnickety in our house apparently.  Oh the arguments that have started in this space.  Rather than continue to henpeck everyone for arguing, I wondered if I could discourage cantankerous moods by adding more peace? Something like ‘Be the change that you want to see’? Make the space more beautiful.  More lovely.  And, of course, add a source of water and find out if Nichols’ notion was worth anything in a home environment.  The spas, hotels, and high end restaurants certainly take advantage of the idea of the blue mind.  Could I?

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i added a rock fountain to a rather inconspicuous corner.  It’s not a loud fountain.  One has to be quiet to hear it, but that might be the point.  So, what happened?

Doireann sauntered in as she does and commented, “I like that.  It’s very Zen.”  She started spending more time at the dining room table.  Eadaoin is very high affect so she squealed with delight.  “Ooooh! A fountain! Pretty!” She sat directly next to it when she ate.  Grace commented as well.  “I like this very much.  It’s peaceful. ”  Milly wasn’t sure about it because it was different.  What I did notice was that when someone started to argue, another girl said, “Hey, we should stop.  Mom went to all this trouble to make it peaceful in here.  We should respect the peace.”

Did you catch that? “We should respect the peace.”  I didn’t tell them to do that.  Somehow adding a new element–a source of water–into the room changed the environment enough that the girls responded in such a way that they wanted to maintain the atmospheric change.  They wanted to behave in a way that would promote peace–at least in that space.  They also enjoyed the effect that the changed atmosphere had on them.  That’s significant.

It’s not easy to get kids to take ownership of their own home environments, but when it happens it’s a big deal.  In any case, I recommend Nichols’ book to you as well as perhaps introducing a small source of water into your own home.  It’s not a big investment, but it might produce huge dividends.

Willing Partnerships

I underwent hip arthroscopy for a labral avulsion last Wednesday.  I had hoped for the debridement which meant that I’d be on crutches for a week and PT for a month.  Instead, there are now tiny anchors somewhere in my hip “anchoring” the detached labrum to its proper place.  It’s not a bad surgery really–two small incisions; but, it means four weeks on crutches and three months of PT.  Four to six months until I’m completely back to normal.  I can’t quite accept this.  I feel like I had the surgery months ago, and it was only eight days ago.  I have named my crutches Tweedle-Dee and Tweedle-Dum.  

If you are a person who is a primary anything, then you might understand my next statement.  I feel like I’m going nuts.  I’m anxious.  Really, really anxious.  I have been the primary caregiver and doer-of-everything for almost eighteen years.  I can’t even unload the dishwasher now.  It’s an event to even get out of bed.  I hate it.  I haven’t left the house.  I don’t know when I’ll be able to drive.  I certainly can’t go to the grocery store alone.  I need help with everything.  I have become dependent upon everyone around me for help.

This reminds me of an exercise I had to do when I was in college.  When I transferred from that tiny private college in New York state to the giant mega-versity in Minnesota, I got a job lifeguarding and teaching swimming lessons.  It wasn’t good enough that I had five years of experience or the gold standard Red Cross certification.  I had to go through another week of training because i would be working in a world-class facility designed to host NCAA and international competitions.  If an elite athlete needed rescuing, then we lifeguards would be the people to do that.  So, we were put through an exceptional amount of training and preparation.  We were also put through a great deal of diversity training.  

The exercise that stands out to me as I write this involved pairing off with another guard.  His name was Volkan.  He was from Turkey.  He was very respectful, kind, and handsome, as I recall.  He once told me that his name meant ‘volcano’, and then he said, “Like a volcano, I am peaceful on the outside but hot underneath,” and then he winked.  I was, therefore, very uncomfortable when we were put together for this exercise.  He always wore a tiny Speedo as many non-American males are wont to do, and I was wearing my red swimsuit with LIFEGUARD practically spackled across the chest.  He was required to blindfold me, and, for the sake of the exercise, I had to pretend that I was blind.  That was to be my temporary disability.  I then had to ask him where the bathroom was located, and I had to trust him to lead me from the entrance of the very large facility to the women’s locker room.  He tied the blindfold around my eyes very tightly.  I couldn’t see a thing.  I felt overwhelmingly vulnerable, and I also wondered if Volkan liked the exercise more than he should, recalling his prior flirtatious wink.

After I overcame my feelings of vulnerability, I felt paralyzed, leaning over, shuffling my feet.  All I could hear was Volkan’s voice guiding me.  He wasn’t supposed to touch me.  That was one of the requirements of the exercise.  We were supposed to respect every person that came into the facility and respecting their bodies was a requirement.  We could never just assume that we could touch them.  Sure, it would be easier to grab someone by the arm and lead them, but that’s pedantic and disrespectful.  What adult would want to be treated like that? I had to trust a guy that I barely knew to get me from point A to point B, and I felt almost exposed, blindfolded in my swimsuit.  That was the point though.  How might it feel to be blind? How might it feel not to know the way? How might it feel to need help from a stranger but not just a stranger? A strange voice? In a strange environment surrounded by strange noises and the echo and reverberations of bodies slapping against water, wet feet running past you? It’s disconcerting not to mention being half-dressed.  That, too me, amplified my dislike.  Would it have been so difficult had I been wearing pants? I like to wear pants.  I feel like I need them. 

Volkan did successfully lead me to the women’s locker room.  The sadist in me found comfort in knowing that Volkan had to wear the blindfold, too.  I had to lead him to the men’s locker room without touching him guiding him only with my voice.  It was a lot harder than I expected it to be.  I had such a strong urge to reach out and grab him saying, “Oh just come on then!” Do you know how long it takes to lead a blindfolded person through a huge facility to the locker room? A bloody long time! I realized how impatient I could be, and I saw how patient Volkan was.  We got to be friends after that.  I admired his fortitude, and he liked my “American humor”.  Had the term “snark” been in use back in the mid-90s, he would have used that word instead.  The two of us were continually scolded for not taking the exercise seriously enough.  That was my fault.  I kept saying inappropriate things while blindfolded.  What? I had to defend myself! I wasn’t wearing pants!

There are many metaphors embedded in this experience, but what stands out to me the most right now is the sudden loss of independence and self-reliance.  What did it feel like to be forced to rely on someone else’s perceptions of reality? What did it feel like to need another person so resolutely? How did I feel then when I couldn’t see? What would it have been like if Volkan would have been impatient, unkind, and expected me to act like a seeing person? 

I think of Grace as I write this or even Milly.  I think of anyone with a deficit who is expected to perform as if they are not deficient.  We are all deficient in some way, but many of our deficiencies don’t impact our lives in a significantly measurable way.  Mental illness, however, can impact us.  It can disable us.  Ask anyone who has endured a season of depression if their ability to function was impacted, and they will tell you that it was.  What about anxiety? Anxiety can be a crippling disability.  And, then we step into the realm of mood and psychotic disorders.  Entire families can be disabled.  

This diversity exercise worked between Volkan and me because we were both willing, and that also stands out.  I was willing to be led, and he was willing to patiently lead me.  It was a good partnership.  What if I had refused to engage or believed that Volkan was entirely responsible for me? What if Volkan refused to help me, not respected my dignity and dragged me to the locker room, or had begrudgingly helped me but had done so with a negative attitude? There are so many ways a partnership like that could go when applied to reality.  What if I believed that Volkan was out to get me or actively trying to hurt me, or Volkan resented being asked for help because he was in denial? He believed I wasn’t really blind at all.  This is a common dynamic in families where mental illness is diagnosed in a child–denial.  An effective partnership becomes next to impossible in that scenario.

Willingness is key, isn’t it? Willingness is one of the core DBT values that Eadaoin and I have been learning.  You don’t accomplish much in life if you aren’t willing.  There must be a willingness to listen, to learn, to practice perspective-taking, to validate, to be humble, to be open to other ideas and solutions, to try again, to try something new, to be wrong, to ask for help, to accept help, and to admit that you don’t know but that, given that you are willing to try again, you might very well know at some point.

For me, I have to be willing to sit this month out.  I have to be willing to let others do for me, and I’m not accustomed to that.  That means that the laundry will be folded differently.  Towels will be hung differently (we all have our ‘things’).  The girls will be eating a lot of gluten-free chicken strips, and my bed looks like a gerbil nest because my husband doesn’t know how to make it.  I have to be willing to look for what works and give up my perfectionism and ambition to do it all so that my hip heals properly.  I have to find the willingness to practice mindfulness and radical acceptance.  It’s easy to say.  Hard to do.

This experience also gives me new insight into Grace’s world.  She apologizes a lot because she feels like she’s always asking for help.  She feels like she’s too dependent, and, well, she has become dependent.  That, however, is not her doing or her fault.  It is the nature of her illness.  Right now, I need help with everything.  I can’t even carry a cup of coffee because I need my hands to use my crutches.  I am forced to rely on everyone around me as is Grace.  It is very unpleasant.  I feel very anxious.  I understand, at least a little bit, why Grace feels so much anxiety.  But, as long as she’s willing to ask for help and I’m willing to help her, we’ve got a working partnership.  I can reassure her that I don’t mind helping her because that’s what I need.  I see this now.  I need my husband to tell me that he doesn’t mind helping me.  What would be even better? I would like him to say that he likes helping me because he loves me.  That’s what I need to tell Grace then.  It’s a privilege to help her.  That would be even better.  I think that it’s normal to fear being a burden.  Why would it be different for her?

Enter willingness.

She’s willing to show up and so am I.  And, I think that’s true for every partnership in life.  Both people have to be willing to participate.  If you’ve got that, then you can go somewhere together.  

Willingness=Hope