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Dan’s daily life



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.”


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.


The Mystery of Healing

Many walking wounded (or rolling, as the case may be) are among us.  Buddhism teaches that pain is inevitable in life, but suffering is optional.  A primary lesson the Buddha taught is that pain + resistance = suffering.  It’s not the easiest concept to digest when you or someone you love is in pain.  It can begin at birth with a slap on the bum from a friendly doctor or birth attendant.  One minute you’re floating in a warm, comfortable sea of fluid, and the next thing you know you’re being squeezed through a narrow opening out into a very bright, noisy, and wide open space.  The boundaries of  the life you’ve known are suddenly gone, and you find yourself pinwheeling your arms and legs through open space.  I had one child in a hospital with a midwife, and watching him go through the free fall that birth in a medical facility can be convinced me to have my other two children at home in a deep, warm pool of water. (I’ll be honest, it made it a lot nicer for me too!)  It was, and still is, a controversial decision, but that isn’t what this post is about.  A physician named Michel Odent ( and countless midwives {including a saint of a woman named Ina Mae Gaskin ( and my personal heroine, Ginger Breedlove, ( )} can address that issue with much more authority than I.

I’ve posted about pain before and with my new job will probably continue to.  The reason it is so present in my mind and heart today is because of my husband, Kevin, who I adore.  For close to a year now he has woken up in the early morning hours, (3:00, 4:00, and so on) in such intractable pain that he cannot get back to sleep.  He’s spent years learning his own body, and because of that he can give me ideas to help his pain become bearable.  I am a Certified Reiki 1 practitioner, (thank you Amy Rowland and have given Kevin some treatments that have helped.  Even when I’m not using Reiki though, the training Amy gave me helps me to connect with spirit.  Kevin had a number of spinal surgeries as a child, and the scars and nerve injuries he was left with are unique.  He has a long-term relationship with severe discomfort, and in the darkness of pre-dawn, I can feel his restless movements when the pain has interrupted his sleep again.  He can usually coach me on what to do and where to do it, whether it’s scratching, pushing on pressure points, or having me push my fingernails into his scar tissue, leaving half-moon shapes etched in a chain up his back.  It is one of the most intimate parts of our marriage and brings up myriad emotions.  I feel privileged, and humbled that he trusts me enough to share this with me.  I feel a deep joy that is indescribable when he sighs or groans in relief, letting me know I’ve “hit the spot.”  The best part of all is when there is still time to hold him or be held by him and feel  his body relax, hear his breathing as he settles back into sleep and know that I’ve played a small part in helping that happen.   It is not easy being that vulnerable to another person, especially when you are a strong, independent man used to taking care of yourself.   It is one of the most precious gifts he gives me, a testament of his love that brings tears to my eyes.

It doesn’t last that long, unfortunately, but he doesn’t hold that against me.  He is willing to let me try again when I can convince him that he’s not depriving me of anything I need.  Every moment of that time is a living prayer from me that the mystery of healing will somehow come through my hands and give him some measure of relief.  It is so hard to stay physically open to other people, especially if you have “differences” that make you stand out from others, real or perceived.  We don’t know why healing happens in some cases and not others. It is still a mystery to healers of all varieties.  In those moments my husband and I share, there is no question that healing occurs for me. It is my hope and prayer that it provides some healing for him as well.  May you allow yourself to give and receive healing today, and every day.  Namaste’.

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’.

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’.


Don’t feel like eating,

Don’t feel like writing,

Can’t stop the crying,

Can’t fight the sucking down, down,

no name, no reason,

try to think outward, of others,

but it’s gripped me and I’m drowning.

It will pass away eventually,

always does,

like storms, and hurricanes,

it hits without warning, wreaks devastation

and moves on,

leaving the work of reconstruction

to be done as best it can.

Darker than the blues,

no light, or sun or stars,

just tears, scattered across my cheeks

like dandelions on the lawn.

Making peace with pain.

Constant physical pain in some part or all of my body has been my reality since about eight months after my son was diagnosed with Ataxia-Telangiectasia in July of 2000.  It started with pain in my arms, then my legs, which led to all over body pain.  I saw many doctors, had many tests, and no one could diagnose what was causing the pain.  After my marriage ended, I tried to live on my own for a while, but ended up in so much distress that my family rescued me.  My four siblings came, helped me pack up my three children, my things, and move me to be closer to one of my sisters, Anne. ( She took our whole family into her home, alienating her own family at times, until we could get an apartment at the complex across the street from her home.  She drove me to doctor’s appointments, was my advocate, and at the same time was getting a Master’s Degree in Social work, raising a teenaged daughter who lost her privacy with our presence in her house, and was travelling all over to play concerts of her folk music, which is sublime.  The doctor she took me to did not believe fibromyalgia was a valid diagnosis and did his best to find out what was wrong with me.  It’s been close to a decade now that he’s been seeing me, and he has finally decided, grudgingly, that if there is such a thing as fibroymyalgia, that’s probably what I have.  Lately, I’ve had the additional delight of headaches added into the mix, which was never a problem before.  My medication levels have stayed the same for years, and have only gone down if anything.  I’m proud of that.  Despite the early days when I had to rub Ben-Gay on like lotion and wrap myself in ace bandages from head to toe, I mostly functioned.

Strangely, the headaches have been the most debilitating symptom I’ve had to cope with.  It’s hard to read, write or do anything much when your head is constantly pounding.  Like most people with chronic pain and/or illness that is an “all in your head” type of dis-ease, I’ve sought out alternative methods of healing.  I’ve had mixed success with them.  This is not in any way intended to be a “bore you to death”, whiny blog post.  It’s more of an explanation for why I haven’t been posting lately, and a plea to the universe to help me figure out the way to heal.  I don’t imagine I’m the only chronic pain, chronic illness patient who has become desperate for some relief.  Added on to this is the reality that no matter how lousy I feel my son depends on me for much of his care.  He is a source of joy to me, but I guiltily wish for respite care at times.  He has a wry sense of humor, is an amazing artist, and I’m grateful that he is in my life.  Prior to his diagnosis I was a critical care nurse who practiced yoga daily, rode my bike to work, and was relatively stable.  Perhaps if I hadn’t already been diagnosed with PTSD years before I was ever married, my physical collapse could have been avoided.  I don’t know.  It’s hard to know how much the shock of his diagnosis contributed to what came later.

Why can’t I just make peace with the pain?  That is one question I have not yet found the answer to.  It’s wreaked havoc on the life of our family, even though I was lucky enough to remarry in 2005.  Sleep tends to be light and elusive, and few people have any patience with my “illness” anymore.  (Why should they, I don’t!)  If there was some way to use it to help others that would be something but as long as the headaches are my main symptom, I can’t do much to help others.  So, what’s the answer?  There probably isn’t one.  It’s the perfect Buddhist lesson, forcing me to confront the fact that there is no solid ground under my feet.  It’s hard to stop groping for a solution, grasping for health that eludes me.  Finding a purpose for it or a way that it can be of benefit to others would be such a blessing.  I am so thankful for the blessings others are giving me, and the connections I’m making related to the pain.  Valerie Johns and her incredible Jizo‘s and Chibi’s.(  Kathy Tooley and all the wonderful women at Anahata Yoga and Wellness Center (, my family who stretches the limits of their patience to put up with me. (Thanks guys)  My incredible husband and precious children, one with an “expiration date” to quote a recent episode of the T.V. show “House.” (  My gratitude for all their love and help is peace in itself.  Blessings and peace to all.  Namaste’.

Caring for yourself.

Lately I’ve been realizing there are quite a few ways you can kill yourself without slitting your wrists or turning the gas on in the garage.  People smoke themselves to death, drink themselves to death, or don’t take care of their health.  Some people overeat, or eat a lot of the wrong things, (like foods high in the bad kinds of fat), don’t exercise or conversely become anorexic or bulimic, and/or addicted to exercise.  You can live a high stress lifestyle, but not find adequate ways to cope with it, so it builds and builds and your blood pressure starts rising higher and higher until you have a stroke.  These are just some of the less obvious ways you can take your own life.

I mention Tara Brach in my blog fairly often.  She is full of wisdom, and wit.  In one of her podcasts she talks about “the not beautiful”, the habits we fell into during our childhood or later in our lives to cope with stress that didn’t look beautiful to the rest of the world.  As a psychotherapist and a Buddhist teacher, she tries to help people untangle the complex webbing that led them to cope in whatever ways they do that is not serving them well anymore.  In a sense she is saving people’s lives. That doesn’t mean it’s easy though, and it definitely doesn’t happen overnight.

“False refuge” is another term she uses to describe ways of coping that end up harming us.  Rather than helping us reach a place of peace and acceptance, they numb us to feelings we don’t want to or can’t cope with at the time. (either because we’re too young, or there might be severe repercussions for allowing our feelings to show)  One of the reasons I like listening to her so much as a teacher is that she doesn’t present any “magic” or “easy” cures.  She is incredibly compassionate and urges us, along with meditations to help us get there, to be compassionate to ourselves.  She challenges us to look deeply, under what may be layers of feelings we haven’t wanted to face.  She asks us to care for ourselves enough to explore our “not beautiful” ways of coping and forgive both the people who may have led to their creation, and ourselves.  Tara is not asking us to be self-centered, but to spend time meditating, leading us toward self-compassion, self-love, and self-understanding which are the foundation for having compassion, love and understanding for others.

I think about all the soldiers coming back from our wars who’ve been devastated both by what they’ve seen, and what they’ve had to do.  On top of that they may be coping with traumatic brain injuries, or amputations, bodies that may not seem like their own anymore. Nightmares, feeling separate from others because who can understand what you’re feeling unless they’ve gone through it themselves?  All the while you were told of the nobility of your service to your country, and it was noble.  The memories of the bodies of friends, women, men and children, blown apart – I cannot imagine the images you have to carry in your minds.  I do know I am thankful you were there for your fellow countrymen and women when you were called and went far above and beyond what should have been expected of anyone.  When it feels like the countrymen you went through this hell to protect aren’t really paying attention anymore, that they’ve “changed channels” in a sense, it must make you wonder if it was all worth it.  I admire you for your service, am so sorry for your losses, and pray with all my being that you will heal as time goes on.

My path is very different, but heart wrenching on another level.  I am watching my son declining regardless of all efforts to try and keep his illness at bay.  He’s never without a cough, but as another young man with A-T is being trached in an ICU in Texas, Dan’s cough is getting more congested and full.  I’m concerned that he may be aspirating more, both of which are going to require a visit to his pulmonologist and a discussion about quality of life.  If he has another swallow test and is aspirating more, do we take away the small pleasure he gets from eating?  Each pneumonia he gets causes more fibrosis in his lungs, and as his beard is sprouting and his mustache filling in, his telangiectasia’s spread just like the spider veins they’re named for.  He has a red, bumpy rash all over his arms, chest and the tops of his thighs called Keratosis pillaris, and nothing is helping it go away.  The crappy power chair we received has a horrible cushion that makes him sweat, and he has frequent yeast infections in his groin, and mouth (because of the nebulized steroids he’s on for his lungs).  All the things I have to do to even try to make these things better he hates but there is no one else to provide his care but me.  Transferring him is getting harder and harder as he grows taller and puts on weight, which are both good things.  I’ve gone through so many deaths in our A-T family, and each child who dies causes unbearable grief to ripple through our lives.  Yet going without communication to these families is inconceivable to me.  Even if all I can do is pray, I want to be doing that.  I want to share in the joys too, like one of our kids being named Little Miss Wheelchair for the State of Texas. ( You have to take the sadness along with the elation.

This post started out on a rather gloomy note, although I stand by what I said.  We who are traumatized, have PTSD, anxiety, depression – we have to find ways to care for ourselves as we care for our loved ones.  It isn’t easy, and it’s hard to find time, but some how we have to give ourselves compassion so there is something left for us to give the people who need us.  It’s hard to find comfort from hugging an empty shell.  Ideas are always welcomed, especially inexpensive ones.

May your life be filled with peace and blessings.  Namaste’.

My SuperDan

Dan the SuperMan

How do you mourn?

I would love to hear feedback from anyone who happens to read my blog about the question that serves as it’s title.  Some losses are immediate and final – for example the death of a parent.  Other losses just go on and on, like looking at the sweet face of my middle child every day and not knowing how to mourn what has been taken from him by the roll of the genetic dice.  Finding something as simple as a pair of pants he can work with is like trying to climb Everest.  No kid wants to look like he’s wearing disability clothes and at the same time, my darling son is wise enough to realize that if the waist doesn’t have elastic (so he can pull them down), he’s not going to be unbuttoning metal buttons or even unzipping a metal zipper on a “rockin” pair of jeans.  Neither of us want it to be that way, but that’s the way it is.  I have sensitive children, whether through genetics or from them watching my own reactions to things that come up in life.  We’re working with sweatpants for now, and it’s better (obviously) than when my husband was paralyzed around 1972.  On a scale of 0-10 in mourning this is nowhere near a 10, but this is just one issue that we have to confront.  Watching the world fall apart (seemingly) gritting our teeth through another lay off (my husband’s 2nd in three years) is much more frightening and painful.  We’ll find a solution to the clothing issue, but the lay-off, the political climate that went from hope to despair over the course of the past four years, recovering from surgery, and coping with the isolation that no one tells you about when you get a diagnosis that makes your child “special”; those are deeper cuts to the fabric of the self.

Personality has a lot to do with mourning as well, some people are better at picking themselves up and moving forward.  Their feet don’t seem to get stuck in the tarry “gunk” that sucks some of us down.  I tend toward getting stuck through a combination of genetics and the way I was raised.  Because of that, I would love to read your stories of getting over and past ongoing mourning, the kind that is a wound that never completely heals.  The most basic comfort is still having my son to hug and hold, his humor that surprises and delights us, crying together over losses, uncountable moments we experience each day.  On dark days , your suggestions may help in ways you can’t know, nor can I, yet.  I hope others may be helped as well.  This feels like a hemorrhage of grief, that slows down at times, but is gushing again before I realize it.

May your pains be bearable; may the sun come out after rain and startle you with the beauty of a double rainbow, may good news outweigh bad, and may you feel whole; held safely by a universe unimaginable in its complexity, majesty and vast distances.

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