Baby Steps

There are mornings I get up, like today, and don’t know how I’m going to make it. The chronic pain I’ve had (along with the PTSD, anxiety attacks, and depression) cripples me and limits me in ways that make me feel down before I even get up. I finally have this wonderful opportunity to work again, and do something to help others. I’ve always loved that about being a nurse. Our house has been such a chaotic mess this whole week though, whether because of the hurricane, election, days off for kids, broken instruments, seeing my darling son’s spine on an x-ray from two years ago and realizing just how many inches his disease has robbed him of in height. Several new medicines, along with treatments he’ll need to not be coughing constantly…this morning I just don’t know how I’m going to do it. I’ve learned some Reiki and want to learn more, I want to feel a connection with spirit, and come closest to feeling it when I’m practicing yoga, writing, or meditating, none of which I’ve had time for or feel like I have the energy for today. This is a very whiny post, I apologize.

The thing is, I’m taking baby steps back to spirit. I watched my son learn to walk, and then lose it. Learn to eat, and then not be able to feed himself anymore. At the same time, the agony fried my nervous system, and I now have phantom pain, or complex regional pain syndrome or fibromyalgia, choose whatever name fits. My baby steps are filled with falls related to these things, not because I think I’m special and shouldn’t have to cope with pain, but because there are days I don’t know how I’ll make it through and spirit seems so distant. In my heart and soul I know it’s as close as my own breath. My tank of strength feels empty, and just as so many of us need to do, I need to find a way to fill it. So I think of my spiritual energy providers, the A-T families I am in touch with, the incredible beauty of my fellow blogger, Wendell Brown‘s poetry (www.foreverpoetic.wordpress.com), Rumi and the other poets who seem to live with Spirit in their every moment of being. It is an honor to to read their work, and share the journey we are all on. I’ve put it out there to the universe, and to all the spiritual beings who provide the light on my path (including my loving family – “nuclear” and extended) and today I hope God will forgive me for asking for help. I may not be able to get down on my painful, shaky knees, but I ask for a sense of presence beyond my limited human one as I try to navigate this day of challenges, and to find joy rather than hopelessness in the tasks I need to accomplish.

Finally, I give thanks from the deepest part of my being for the love of all those around me. I bow in gratitude to my adopted family, the Landis, Blum, Derstines; to all my siblings and my parents, to my children and my amazing husband, and to those people who give of themselves to help the rest of us stumble closer to finding our connection to our Spiritual self, Wendell Brown; Rumi; Tara Brach; Pema Chodron, and so many, many more regular people who amaze me with their strength and faith. May we all feel the presence of the One who brought this universe into being. Namaste’.

 

Nameless energy

I find that when I don’t write for several days I have a tendency to wake-up with a nameless energy that feels like anxiety, or panic.  That has been one of the reasons I’ve wanted to write my whole life (literally and figuratively).  Two nights ago we (my husband, sixteen-year-old son, and I) spent a while looking at photos of Daniel when he could still walk, run, climb, and seemed just like any other kid. (except that he got sick pretty often)  Moms of kids with A-T live on a razor’s edge of hope.  We are the ones (usually) who provide the treatments they hate (at least in my case – because Dan has no IgM his respiratory needs are many), stay with them in the hospital, and try to help them make sense of what is happening with their bodies.  It’s not an easy job, and I tend to think of us as warriors.  That doesn’t mean we don’t break down occasionally, but we also develop an inner core of resilience.  We walk in the shoes of other mother’s when they lose their A-T kids, because each one feels like our own.  We’ve seen the limits of medical science, struggled with our feelings about stem cell research and other potential “cures” or treatments, and spent more time on our knees or in hospital chapels praying than anyone I can think of other than monastics.

What we never lose is our love for our kids.  They enlarge our hearts, challenge our spirituality (because they seem to have an innate spirituality of their own), and break down any walls we might have from our “pre-A-T” lives.  While watching my son’s suffering is never easy, I wouldn’t give up the experience of knowing him, of loving him, of having the privilege of being a part of his daily life, for anything.  I’ve spent countless hours blaming myself for his condition (it hasn’t helped), kicking myself for not picking up on warning signs of impending infections (although this has gotten less frequent), and realized that none of that is as important as cherishing every moment he and I have together.  My Daniel is, indeed, in a lion’s den; but he has me by his side, along with his Step-Dad, Father, Grandparents, brother and sisters to help us.  The lion may win in the end, but it is Aslan, whose claws are always drawn in, and the spirit of life in every living thing that brings my son joy and the strength he needs to fight. (for now).

Today my heart is with all the A-T Moms who have lost their children, most recently, Pamela Skyberg Digby, who lost her son Jared less than a month ago.  May we all find strength for this journey, and may Jesus or Jizo (guardian or travelers and children) guard and protect our children as we go day to day together, thankful for each moment.

Peace to all, blessings, and Namaste‘.  (if you’re interested in finding out more about A-T, go to www.atcp.org)

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. (www.annehills.com) 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.(jizoandchibi.com)  Kathy Tooley and all the wonderful women at Anahata Yoga and Wellness Center (www.anahatayogawellness.com), 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.” (www.fox.com/house/)  My gratitude for all their love and help is peace in itself.  Blessings and peace to all.  Namaste’.

Fatal

When your child is diagnosed with a fatal condition at the age of 3, your life is changed irrevocably.  Hearing they will lose the ability to walk, feed themselves, and be independent is hard enough, but putting a limit on the number of years you will be together is catastrophic.  The neurologist tried to put things in perspective with the following analogy:  say you’ve been planning a trip to Italy.  Saving money, learning the language, imagining all the places you’ll go, and the experiences you’ll have…finally the day arrives and you get on the plane to Italy.  Only the plane lands in China, or Greenland – somewhere completely unexpected, a place you are totally unprepared for and hadn’t planned to go.  “You have two choices,” he said, “you can either bemoan the fact that you didn’t get to Italy or you can enjoy the opportunity to visit somewhere you never expected to go.”  It’s a nice analogy, except being told your child will die before you do isn’t like finding yourself in a country you never meant to visit.  It’s like being dumped on another planet with no oxygen, no recognizable landscapes or food, and no way back to where you once were.

Numb, you look at your beloved child and nothing about him or her has changed.  You ask the doctors a thousand times, “are you sure?”  Gradually, you begin to find other families going through the same thing you are.  It is a link you cling to for hope and help, a lifeline of information and inspirational people.  Then you start going through their pain as well as your own.  Children you’ve heard about for years actually die, and you grieve each death as if it was your own child, because it is.  You pray, beg, plead for each life to be spared.  You shatter when they are not spared, and wonder, “how many days do I have with my son or daughter?”  You feel an irrational sense of guilt for passing something on that you didn’t know was hidden in your DNA.  Countless nights, in hospital beds and at home, you weep as your child sleeps, making sure you don’t wake him or her with your convulsive sobs for his or her suffering.

You also treasure every moment you have together.  The world may have radically changed it’s axis, but you still have your child (for now) and revel in every smile, just as you hate yourself for every procedure you have to make them go through to be healthy, hoping your presence at his or her side will mitigate some of the pain.  Looking in the mirror, you see a face you no longer recognize, but hope your child does.  Yes, we all have a fatal condition the day we are born, in a sense.  There is mystery though, and hope for a long life.  The doctors give you the statistics, “most kids with this will die in their late teens or early twenties”, and you want to scream “take it back!”

Then, for some of us, as readers of my blog know, you process it over and over again.  Especially when another precious child who shares your child’s diagnosis is laying in an ICU, fighting for his or her life, and you pray with everything in your being, “beat the odds”, “live, please, dear God, make those doctors eat their words, and let my darling son (or daughter) live.”  It’s high stakes, but you gamble anyway.  What choice do you have?

May peace, blessings and compassion fill your days.  Namaste’.

Broken

There is no question that I inherited some mental illness from the gene pool that determined my being.  Working with it has been one of the biggest challenges of my life, and continues to be.  Since before I was born a message was embedded in my consciousness that something about me was “broken”, fragmented, not whole.  Then key role models showed me how to please others, how to salamander into selves that would be more acceptable, hopefully, lovable and unified.

A huge fight ended up the night for my significant other and I last night.  There is no question that words can cut like finely honed steel, the blades making lawn ornaments out of a love that once felt wild, untamed, without conditions.  How do people keep fighting and come back stronger?  Every argument feels as if it cuts more of my “self” away, breaks the bits of the puzzle figured out back into nonsensical cardboard shapes.  My words are no less wounding, and I’ve begged, “released”, and encouraged my mate to abandon me, along with my three children (who would have very strong feelings about that – they would be devastated if he had taken me up on my offers).  Not loving myself, I keep wanting to demand a list of what HE loves about me, or why.

We’ve often spoken of our “trade-off” a broken body accepting a broken mind.  How does that change when the realization dawns that both partners have broken hearts, broken bodies, broken souls?  How do we learn to love and accept that we are human and imperfect?  There isn’t (or at least hasn’t been for me) one “dark night of the soul.”  It is more the norm.  Was one of the Buddha‘s teachings that I’ve not understood the fact that in human form we are all broken?  That it is in learning to breathe through our most shattered times and  letting go of that feeling (that we are broken, or imperfect) the truth that “life is suffering”? (the first Noble Truth)  In other words, trying to let the suffering feel less personal because it is universal) It was never my intent to hurt my dear companion.  I was groping to understand in a fit of rage how his mind worked.  Why is it so hard for me to accept that it was the same for him?  How is it that the only solution that ever comes to my mind is, “just walk away, no one will blame you”? (for my partner, not me)  rather than, “how can we work this out?” (hopefully still his solution)

Another  “blog as journal” entry.  I apologize.  As my tagline says, I’m “trying to find the words” to make sense of this unexpected life.  Thank you for any comments that might help or challenge my ability to understand.  I wish you blessings and peace.  Namaste’.

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.