Dan’s daily life

 

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It has been fifteen years since my son Daniel’s diagnosis of Ataxia-Telangiectasia.

Dan’s day typically starts with coughing.  He coughs on and off over night and his cough is relentless throughout the day.  Dan requires help to get out of bed each morning.  He needs assistance to sit on the edge of the bed to do a pivot transfer into his power wheelchair. When we get to the bathroom he again needs assistance to get to the toilet. When he is done I help him transfer back to his powerchair and get dressed.

We next move down to the den where I help Dan transfer to a comfortable chair in front of the television.  His respiratory treatments will take an hour, sometimes longer.  They start with a treatment that requires him to wear a nose plug and hold a mouthpiece with his teeth as medicated air is rhythmically pulsed into his lungs at 11 breaths per minute.  I perch on the arm of the chair he sits in and hold his cheeks in to minimize any loss of air flow.  He needs every drop of medication for his lung disease, another part of having A-T.  Depending on the month, he then has 2-3 nebulizer treatments which can take anywhere from 30 minutes to an hour to finish. He coughs on and off through all of this.  According to his pulmonologist, Dan has asthma,  chronic bronchitis (inflammation of his lungs) and emphysema (destruction of his alveoli), which together represent Chronic Obstructive Pulmonary Disease.  The respiratory infections that started before he was even diagnosed with A-T have taken their toll, despite frequent, prolonged hospitalizations and antibiotics.  When his respiratory treatments are finally done, he takes his pills with my help, I help him transfer to his powerchair again and he heads out for his hour-long bus ride to school.

Dan has more respiratory treatments at school, and at times requires extra fluid or feeding to be given through the j-tube in his stomach.  His physicians call his eating, “quality of life eating” because he cannot eat enough to sustain himself.  That is why he has the feeding tube in his stomach.  He eats lunch with assistance, and must have a scribe to do any writing during his classes. He also requires help anytime he needs to get into or out of his powerchair during the school day.  When school is over he has another hour on the bus to get home.

Dan has about sixty minutes to watch television, play video games or create art on the computer before his respiratory treatments begin again, and they must be repeated before he goes to bed. Dan suffers from a deep fatigue which comes from having to struggle to do much of anything. Moving, breathing, eating and even thinking require time, patience and sustained effort.  His constant cough also wears him out.  He is acutely aware of the difference between his life and that of his siblings; his 20-year-old brother who is away at college and has a girlfriend, his 16-year-old sister who is in high school, plays three instruments and loves marching band.  He feels the pain of being different.

The last time we were in the hospital Dan told me he wasn’t sure he wanted to go on if he became really sick again.  It was all too much – the constant respiratory treatments, IV’s, pills, time on the ventilator, time away from home in the hospital.  We cried together in witness to all he has been through.  Then life went on, as it does.

Dan used to run across the grass, laughing, with his brother and sister.  He used to climb on the monkey bars at the park.  He walked holding my hand.  The physicians who diagnosed him prepared me for his death, for the big loss.  They did not prepare me, nor could they prepare him, for the slow, incessant progression of his disease.

When he is in bed, at the end of a long day, I sit next to him and we talk.  Sometimes we hold hands in the glow from his feeding pump, which hums as it pumps the feeding into his stomach. At times he shares his frustrations with his life, at others he is too tired for much talking.  Before leaving his room I say, “I love you Dan, have a good rest. I’ll see you in the morning.”  And he replies, “I love you too Mom, I’ll see you in the morning.”

Diagnosis

Steps falter, grief hangs around my neck.

“Run for us” the doctor’s say.

Wobbling, almost falling, he runs.

They are kind.

“Are you sure? Are you sure? Are you sure?”

“Yes,” “Yes.” “Yes.”

The doctor, holding a tiny giraffe, watches his eyes intently.

Click, Click, Click

it stands, it falls, it stands, it falls.

My son smiles as his eyes, staggering, follow its crooked path.

Tired, he rests against me,

my useless hands twining his soft hair in the cold, blue light.

 

New day, new job

Today I start work for the first time outside our home in two years.  I was up until 1:00, up again several times because of pain, and am now  hoping coffee will pry my eyes open enough that I won’t fall asleep during orientation.  A part of me wistfully wondered what it would be like if our middle son, who is 15, was not afflicted with this horrible disease called Ataxia-Telangiectasia.  I wouldn’t be up so early, because he’d get himself ready for school.  He wouldn’t have to suffer through 5 respiratory treatments along with two other liquid medicines and four pills.  He’s be able to sleep later himself, and the dark circles that are a constant under his gorgeous green-blue eyes would be transitory.  Knowing our son, he’d probably have broken several hearts, or at least have had several girlfriends by now.  Instead, every moment he spends awake takes more energy than I can imagine.  He has become left-handed, not by choice, but because his right hand shakes so much he can’t really use it for much.  Video games are becoming harder and harder for him to play, and he has a two-hour round trip bus ride to get to a school where there are kids he feels comfortable with.  Kids like him.

In addition, he’s been coughing for weeks now.  His doctors look at me sympathetically, and say there’s basically nothing else they can do that won’t make his life even more miserable than it already is.  I’ll spend the day worrying about all of my kids, but especially him.  The bright spot was a gift I was able to give him last night.  When I reminded him that I would be working today, he looked stoic but depressed and said, “And I’ll have to have some nurse come in and take care of me.”  “No honey,” I replied, “You will always be my first and most important person to care for.”  I may have to lose some sleep, but to see the look of relief that came over him when he realized that for now his life would stay basically the same…there’s nothing that I wouldn’t be willing to give for that.  I can’t help but think of my husband’s parents when he was young and in the hospital for weeks, months at a time.  His Mom would come in and out during the day, and his Dad would come after working all day on his feet doing hard, manual work, and spend the night.  This pattern was repeated constant times, with his sisters at home missing their Dad, I’m sure.  They didn’t complain though, not one of his family.  Just as with our son, his family knew that the suffering their child and brother was enduring was far worse than whatever they were giving up to help him.  They had another characteristic that helped them.  A deep, enduring faith in God.  It may have been shaken at times as they had to stand by, as I do, and see their son suffer, but somehow they held on.  I pray with all my heart that I can find just a little of that faith myself today.  Some link to spirit that helps me keep walking through the day, smile with my new co-workers, and drink coffee.  A LOT of coffee.  Namaste’, and may God Bless all of us on this spiritual journey in our human forms.

Thoughtful blogging.

My last blog post wasn’t very thoughtful.  Hopefully people read all of it and didn’t stop with my whining and complaining.  (oh wait, that WAS all of it!  : D )  Nothing in life comes with guarantees, and I’m very lucky to have the wonderful husband I do.  The fact that I get triggered is my issue, not his, and meditation is the best antidote for that particular problem.  Our couple’s therapist says we are on opposite ends of the spectrum in reference to the Mars/Venus characterization.  I’m as emotional as you can get, and he’s as analytical and logical as you can get.  I’m a female Kirk to his Spock – ha!  For a while our therapy sessions would start like this;  “So, what major life events have happened since our last session?” because we fast forwarded through so much.  In the time most couples would have had decades to go through issues, we’ve had months or weeks to go through.  My husband has honored the vows he made on the day we got married every single moment of every day.  He’s had catastrophic health events happen, plus taking on a whole “needy” family.  He wouldn’t characterize us that way though, he’s not that kind of man.  He really is a prince, and he has given us stability.  While I spin around like a broken accelerator dial on the dashboard of life, he keeps us all on cruise control.

On top of that, he’s helped me to stay more balanced too.  He’s a great Dad for our kids, and he’s the most virile man I’ve ever met.  In other words, the chemistry is still there and I can’t imagine it ever not being there.

I hope this blog entry is more thoughtful than my last post, which was written by Mrs. Hyde. ; <   I try not to let her take over too often.  We’re all human, for better or worse, and the best we can do is keep working on lengthening the pause between action and reaction.  In my case that is going to take A LOT of hard work!  Laying on the grass, even if it is brown from lack of rain, and picking Queen Anne’s lace on our family walk and roll after dinner (two bipeds, two wheelchairs, three quadrupeds/canines) can do a world of good in changing my perspective from that shrunken, self-absorbed me to a woman very grateful for all my blessings – with my husband at the top of the list.  Peace and blessings to all.  Namaste’.

Resiliency and vulnerability

Listening To Shame is a talk by Brene’ Brown. (www.ordinarycourage.com).  I’ve linked to it, because this is a talk I took notes on.  Sitting at my dining room table (when I should have been making my family a fantastic dinner) I took notes on her talk so the words would be on paper for me to refer to.  Dr. Brown made a number of points that had me bouncing off of my chair with excitement, one in particular being that as a culture (and I’m paraphrasing here) we numb vulnerability.  She also talked about shame, and links were made  between shame and vulnerability.  I don’t know when I came to believe that being vulnerable was shameful.  As Dr. Brown says in one of her talks (I listened to several last night ) vulnerability easily gets confused with weakness, and weakness is not seen as a virtue in our society.  Dr. Brown speaks about how we try to numb our vulnerability, saying we are “the most in debt, obese, medicated and addicted cohort in history.”  (“cohort” being a reference to the group she studied)  Why?  Because many of us try the above, we try to numb our vulnerability, and “you can’t selectively numb,”  according to Dr. Brown.  When we numb vulnerability, we numb everything.

Dr. Brown gives a definition of blame as “a way to discharge pain and discomfort.”  That definition was like an arrow hitting a bull’s eye in my heart.  Blaming myself for my son’s genetic neurodegenerative condition (and pretty much everything else that is “wrong” or not good in our family’s life) has been a way for me to discharge some unbelievably painful and uncomfortable emotions.  It’s also slowly been killing me; at least the me I want to be.

It goes against all of our biological programming (fight, flight, freeze) to stay vulnerable, like you’re constantly exposing your underbelly to the world.  It doesn’t seem like great advice for someone to tell you to stay that way, from an evolutionary standpoint.  That’s if you equate vulnerability with weakness though, and Dr. Brown isn’t doing that.  She equates vulnerability with courage, compassion, and connection.  Those are things that prolong life;  things my Mother is an expert at, and that she tried to teach me.  They are things she learned from her own mother and from losing her only sibling, her brother, in World War II.

She learned it from seeing the vulnerability we ALL have, and when she was hurt in that excruciatingly tender spot we know as our heart, she allowed it to make her stronger.  She didn’t build walls around herself, she flung herself open to life and said, “See?!  I’m still here!  I’m still standing, and loving, and laughing.”  My Mom knows vulnerability inside and out, like a dear friend.  I aspire to her example, because all of the things Dr. Brown suggested at the end of her talk as essential to our survival are things my Mother lives every day of her life (and my siblings do too):  1) Let yourself be seen.  Deeply seen.  2.) Love with your whole heart even though there is no guarantee.  3)  Practice gratitude and joy in moments of terror – fiercely.  4.) Believe, “I am enough.”

I know my Mom has struggled with the fourth principle or piece of advice.  I think a lot of us do.  She has told us, her children, over and over again that we are enough – even more than enough.  Dr. Brown’s talk served as a stirring reminder of so many moments in my Mother’s life.  Standing on a ship in the Mediterranean Sea she could throw a wreath over the rail in memory of her brother, whose body was never found; helping deliver a baby on a moving train in India around the 1950’s;  GOING to India with my Father, oldest sister and having two more babies during their five year stay in the 1950’s…the examples go on and on.  She’s a tough act to follow but she’s never indicated in any way that she wanted to create more of her “selves.”  As I wrote in my last blog post, she’s a pro at letting go.  She worries like crazy, and I don’t want to make her sound too perfect, but she’s an amazing woman.  Her life has really made a difference to a lot of people, many of whom she has never seen again.

My Dad was amazing too, and my intent is not to slight him in any way.  Somehow though, whether it was because she was a woman at a certain time in history, or because she preferred to let my Dad shine to the outside world while she was his emotional support, she received much less attention for the remarkable life she lived (and continues to live) than he did.  She’s okay with that, completely.  She inspires me more than I can express, because despite all the pain in her life, she has allowed herself to stay vulnerable;  and she’s one of the strongest women I know.  She never chose the easy path, never shied away from any challenge, spoke her mind even when people didn’t necessarily like her politics.  That’s how you end up with a gay, Jewish man, who survived the concentration camps in WW II. as your best friend and call him your “soul-mate.”  It’s no wonder so many of the guys my sisters and I dated came back to visit my Mom.  She knows how to listen, her heart is completely open, and her strength is like that of a Goddess.

Thank you Mom, for planting the seed that allowed me to hear Brene’ Brown and still (at my age) have the possibility to bloom.  You’ve blessed the earth in every spot you’ve placed  your delicate foot.  The hardest challenge you’ve given me, and it started at conception, is how the hell I’ll ever live without you.  It’s a challenge you’ve been preparing me for, and one you’ve tried your damnedest to protect me from, but one we’ll face nevertheless.  Bless you for bringing so much beauty into my life, and the lives of all those around you, especially your family.  I bow to you Margaret Eunice Hartley Hills;  to your wisdom, to your beauty, and most of all to your completely open and vulnerable heart.  Thank you for teaching me that vulnerability is the key to resiliency, and strength.  I love you Mom.

Transitions

My oldest son left for a week yesterday.  He’s vacationing with a friend and his family, people I really care about but don’t reach out to enough.  I had tears in my eyes when he left, even though it isn’t “cool” to miss your teenager. (especially when it’s only for a week)  He bring so much light and life to our house though.  Nothing seems quite as vivid or bright when he’s not here even though he can be the most irritating person on earth at times. (can’t we all, really?)  It’s a transition, one we’d hoped his younger brother would be able to make this year by going to camp.  It didn’t work out, but it was a start.  Our children start leaving us the day they are conceived, and as we move through life with them we constantly work at learning to say “goodbye.”  It is a lesson my mother and father taught our family so well.  They never held us back, never let fear keep us from having opportunities (like me going to Israel in college during the time the U.S. Marine barracks in Lebanon were bombed).  I am so thankful for that.  That ability to let us go, then welcome us back, meant everything.  It is one of the most important lessons they taught me.  I’m still learning it today.

Writing as a profession

I’ve been away from blogging and writing for weeks now, and it has had a definite impact on my overall view of myself and my life.  Writing has always been important to me, as it is for many of us.  It is stated in countless books about writing that for some, if not all authors, the act of writing is in part a desire to be understood.  One of the ways our inner editor negatively impacts our lives as writers is when people close to us misinterpret or personalize aspects of our writing in ways we didn’t intend (published authors know the pain of this better than anyone).  Critics can be harsh and unrelenting, even for just a few words written in a status update on Facebook or Twitter.  This can silence you before you even begin to explore the depths of your creative soul.  No, your life doesn’t have to be tragic to grant you access to the world of publication.  Tragedy that becomes a success is a story line people identify with and dream of, especially right now with the horrific downturn in the economy and its impact on the 99% of us who are not wealthy.  It is hard not to feel cynical in times like these about “following your bliss.”  Especially when you have children who need food, a roof over their heads, and clothes.

Recently, and for the first time in my life, I’ve experienced what it’s like to not have dental insurance.  It’s sobering and the idea of life without health insurance begins to take on nightmare dimensions.  Positive thinking, banishing worry, and letting go of attachment to outcomes is very difficult when you have a family in which almost every member has a pre-existing condition that would make buying health insurance privately impossible.  Fair or unfair, when both members of a marriage are unemployed either spouse can feel a sense of betrayal, especially if there is little or no prospect of re-employment.  Trying to turn towards the positive, the optimistic view, in times of nation-wide, even world-wide depression, takes an immense effort and for some (like me) even medication.  Writing as a profession takes incredible discipline and talent.  It helps if the writer has a partner with a conventional job that provides basic insurance for health and dental care. (vision care is another plus)  Again, stories (like J.K. Rowling‘s) of authors who overcome incredible odds and hardships can help prop us up for a time, but measured against the totality of human suffering and depravation in our world today they become more like tales from the lottery or urban legends than they do realities that can be emulated or aspired to.  “True” writers don’t do so for money anyway.  Such pecuniary goals are laughable in the upper circles of creative nobility.

There are no easy answers.  Hope is a delicate flower that needs constant care if it is to blossom and grow.  Writing can nourish hope, but choosing to do so in a public way (especially if you feel compelled to be true to yourself) can invite the most soul crushing kind of criticism.  May your spiritual practice, whatever it might be, sustain you in these times that challenge even those with the hardiest dispositions.  To those who share my dream of a writer’s life (or any of the creative arts), hold fast to your aspirations.  May your muse be ever near, and support be available to you in abundance.  Namaste’.