Painful Holidays

We are just past the mid-point of January.  I am finally prepared to talk about the reality of chronic illness and how much worse the Christmas and New Year holidays make it.

I have to admit, the idea of family, friendship, giving and receiving, feasting, good will, and gratitude are very appealing.  And why shouldn’t they be?  Yet, it isn’t difficult to see that most people’s holidays have heavy doses of dysfunction in one or more of those areas.

I, for one do not have a family anymore.  It is hard to see others together and not to be a part of it.

Even those of you who have a family and supports may feel lonelier during the season.  

Some of the obstacles facing those of us with a chronic illness include basic mobility, travel, sitting at a dinner table for a length of time, medication side effects, gastrointestinal issues, alcohol, and so forth.

Many times, a family member or friend will try to include us.  This is well intentioned, usually.  The difficulty is that we often become the focus of unwanted attention.  Possibly it gets worse, with the peanut gallery chatting us up about the “cure” that worked for their “friend”.  

Also, who wants to spend a holiday event fielding questions, some of which are very personal.  We aren’t showing up to give a medical seminar, are we?

Travelling, even just around town can be nearly impossible if you have mobility issues.  Pain and inflammation can be a source of tears and fatigue.  I’m so thankful for online shopping.

Eating during the holidays usually means a deviation from our normal diets.  This can lead to flares in multiple conditions.  What should be a treat turns into a sleepless night and embarrassing discomfort.

New Years is characterized by alcohol consumption.  Many medications react badly when mixed with booze.  Pain medications can become deadly if mixed.  And yet, maybe we remember the years before we got sick and the fun we had.  There can be a lot of grieving.  We grieve for a life or an ability that we have lost.

As for my holiday, it was everything you’d hope for.  I was in the hospital and had two surgeries.  I cried as I wasn’t allowed to eat or drink pre-op on Christmas Eve.  The hospital sucks, but it’s worse on significant days.

So what is my mindful solution to the holiday predicament?  Simply, try not to drown.  Now is not the time to try to swim across the channel.  Rather, meet your minimums and stay afloat. 

You may have to decline certain invitations.  You may have to take more medications.  You may have to spend extra energy to prepare body and mind for other people or “that relative”.  You may have to feel lonely and cry into your hospital pillow.  It sure was unpleasant but the point is that I did what I could to not drown and see the other side of the holiday madness.

Mindfulness means we accept what comes and do what we can or not do what we cannot based on the present moment.

Can you relate?  Tell me your story!

11 Confessions about Chronic Illness

I saw this today:

11confesions

 

And this is my response:

Yes, true. But!!

1. Guilt is a useless emotion

2. Feeling lonely is a good chance to know and love yourself

3. Anxiety and depression are challenges to accept and or tackle

4. Pain sucks — but pain medication is fun

5. Every healthy day is a gift, but you are still one day closer to being dead

6. Be bold and let your free flag fly — where what you like! Shave your head! Keep it fresh!

7. Beds need people too!

8. It’s okay to be afraid, and it’s okay to say no

9. Exercise is just another addiction, might as well eat chocolate

10. Most doctors will kill you if you let them… that’s why we need nurses

11. Feeling useless and being useless are two separate things. You have so much to give and just because we live in a materialistic culture that likes to measure phalluses doesn’t mean that you aren’t giving tons to others. Hug!!

 

–The Mindful Crutch

Being A Victim

Being a Victim

The other day I was up at the chemotherapy ward. I had a pleasant conversation with a 61 year old man. 11 years ago, he was diagnosed with Pulmonary Fibrosis. In spite of being ill he had a great attitude. He had these words of wisdom:

“If you find yourself asking: Why me? Change the question to: Why not me?”

 

I chose to share this today because it’s a reminder of a few things:

 

1. We aren’t alone in our pain and suffering

2. We are all equal

3. The Universe is benevolent; or at least neutral

4. Anything can happen

5. Making the most of NOW is the best thing to do

 

Really, you are not a victim. If you are, then we all are.

A friend of mine who is a pastor often says, “But for the grace of God, there go I.” What does that mean? It means that despite what we want and despite all our efforts, we can end up in any situation – for better or for the worst.

I know I am speaking to a broad audience. I imagine some of you are, objectively, fairly healthy. On the other hand, I imagine that some of you are in constant pain. What do you have in common? Everything!

There will be times of life when you can be the helper, and there will come a time when you need the help.

Open your heart to this reality and may you be touched with compassion for yourself and others.

Monkey Mind Panic Attacks

Since I know you love hearing about them.  I am writing about my most recent panic attack which was yesterday at 2pm.  It lasted until just after 4pm.  This post will give the reader a picture into what a panic attack accompanied by chronic illness feels like.

In brief, if we named panic attacks, I would name this one like an interesting flavour of ice cream.  I’d name this panic flavour, Monkey Mind Panic.  Caution, contains nuts (pun intended).

icecream

Monkey mind, a phrase I picked up a while ago, is “from Chinese xinyuan and Sino-Japanese shin’en 心猿 [lit. “heart-/mind-monkey”], is a Buddhist term.”  (Wikipedia)

I imagine the monkey habitat at the zoo.  A deafening, dizzying, cacophony of “Ew Ew Ah Ah.”

monkey-mind

 

Racing thoughts obviously go along with every anxiety disorder.  They play a particularly powerful role in the anxiety before, but also during a panic attack.

During a panic attack, it’s like an argument erupts in my mind.  The mind does not heed the warning, Don’t Feed The Trolls.

I wanted to tie this into chronic illness.  It might explain why I had the attack.

Here are some of the contributing reasons:

  1.  I have issues getting around my apartment.  I was spending the day and this night on my own
  2. I regularly take some serious medications, one of which is for my anxiety disorder.  I had run out on the weekend and the pharmacy didn’t deliver until later
  3. I have on-going concerns about my recent surgery.  I feel frustrated that the surgeon’s office has not returned my calls
  4. I have a phobia of vomiting and choking.  My stomach was off from a Meatloaf I made that was too fatty (I went on one of those Everyone loves Bacon kicks)

bacon-double-cheeseburger-stuffed-meatloaf-2014fb-wide2

 

So I add bits of those ingredients together and add the secret Monkey Mind ingredient that I called Existential Freak Out No. 9 aka “Oh my god, I’m going to die.  I am dying.  I need an ambulance.  I should call one.  I don’t need an ambulance.  I should be seeing the doctor more because there must be something they don’t know about.  I’m too young to die.  Everybody dies!  Yes, but no one is especially good at it…”

Okay, okay, take a breath.  STOP!!

And this is the quiet moment when the Monkey smiles at you and starts peeling a banana.  It’s gotten its way.

 

0cb1725c000005dc-2880780-image-a-40_1419004497062

 

This is that moment of lucidity, the calm inside the eye of the tornado.  It’s here that I remember that I talk a lot about mindfulness.  I give myself a nervous laugh at the irony.  The irony makes me feel more human and asserts that I’m not the only one who might be feeling this right now.

At this point I did what I needed to do.  In that moment, I need to calm my stomach, so I took a stomach medication.  I also needed to deal with the Monkey.  I did this by getting up, changing my perspective, hobbling around on my crutch and tidying up in the kitchen for just five minutes.  Then I took some breaths, called the pharmacy to ensure my medications were coming.  I then sat and waited.   Things were winding down, I was exhausted but I had to stay awake.  I decided to grab one of my journals and a Sharpie and make a list of words I knew in French.

My medication came and that solved the other physical issue.  I made myself a tuna sandwich.  Then I fell asleep.

So take what you will from that!  Can you relate?

 

tintin-plastic-folders_0003-black-island

Is Your Heart Open?

I imagine that somewhere in, what I presume to be an infinite multiverse, someone is looking through the windows of what, to us, is a closed down Blockbuster Video, and asking, “Is Your Heart Open?”

There are many magical ways to talk about the heart.  There are many great analogies and metaphors that bring us closer in our understanding of the heart and that open us to compassion.  Yet, I’ll look to the left and then to my right, and the world is still not a safe place.  To be nurtured it feels like we have to rig the game (of life).  It is as though, if we play our cards right we just might “enslave” a few people to care for us.

And there are some of us who want to care for others.  We think of caring as intrinsic to our worldview.  And there are others of us who don’t really care too much about it — maybe our lives are fairly independent and we’ve had a good deal of success (and we don’t want anyone else taking it away) or maybe we’ve been hurt so badly that to think of caring is to relive traumatic nightmares.

There are philosophies of the individual and philosophies of the collective.  We might be shaped by culture — political ideologies, religion, the sciences.  We might live in a part of the world that doesn’t do “hugs” or a part that does so many hugs that they are meaningless.

If you are alive, you are on some sort of journey.  I dare play the existential prophetic game.  I am sure we each have a unique path but there is some significance to the crossing of our paths.  How will we greet each other?  To what degree would you help, care about, and identify with your fellow traveller?  How open is your heart?

One of the beautiful things about the heart, is that it’s not prone to stay in middle states — it beats or it doesn’t, in other words.  Similarly, if we open our heart to live in a compassionate way, to say compassionate things, and have compassionate intentions, that open-heartedness beams full and bright.

Someone might say that they wish they could open their heart, but they just can’t.  So long as your living (and maybe even after your dead), you make the choice for this moment.  Can you define the three phases of a breath?  Inhale.  Pause.  Exhale.  That is a moment.  And if you can bring your attention to those three aspects of a single moment, you are further than many in your ability to open your heart.

The open heart is supple.  It is delighted easily.  It can take a lot of disappointment.  It is a giving entity.  It is a forgiving entity.  It doesn’t worry about who gets the last cookie, but cares only that everyone has had something sweet.

The open heart is soft.  It breathes quietly; sometimes deeply, sometimes not.  It’s eyes are seeing but not judging.

The open heart connects to our roots and to the sky.  If there is healing, it comes as a lightning bolt to the tip of our fingers.  If there is equanimity it wells up and supports us like a hundred year old oak.

Sometimes we pass over our own hearts.  We think that we are too damaged.  Too busy.  Too broken.  Too old.  Too young.  Too “normal”.  Too neurotic.  We aren’t one of the beautiful, rich people.  We might not be a nobel laureate.  We haven’t campaigned against land mines or given very much to Green Peace these days.  We might be sick; disabled; addicted; depressed.

Are you hurting somewhere in there, my friend?  Come on out.  Let a tear fall.  You too have a worthy heart.  You have much to give and in the course of this journey there are blessings to be had.

 

 

 

 

 

 

 

The Case Study of Mister Woo

First, a story.

 

Mister Woo is a 45 year old male.  Three years ago he was diagnosed with an autoimmune disease.

Woo had lived a moderately healthy lifestyle.  He had gone to the gym twice a week, ate broccoli and two portions of fish a week, and subscribed to Men’s Health magazine.

Since his diagnosis of an autoimmune disease, Mr. Woo has upped his exercise routine to everyday, though he feels more tired and needs pain medication to get through just a few hours of his schedule.

He has done a juice fast, consulted experts in naturopathy, acupuncture, Reiki, as well as allelopathic surgeons, though he gave up his health benefits when he quit his job.

He no longer reads Men’s Health but instead spends his days logged into a chatroom for persons with his autoimmune condition and shares links from a huge bookmarks folder he adds to from obsessive Google searches.

Mr. Woo has given up his dream to go on a month long photo-history journey throughout the Netherlands.  He is now planning a trip to a research hospital in Detroit to participate in new clinical trials.

Mr. Woo has started suffering marital problems because he doesn’t share his thoughts and feelings with his partner.  His partner complains that Mr. Woo no longer acts and talks like a regular person but is a walking encyclopedia of his disease.

Woo admits that he becomes mired in debates about diets and supplements.  For all Mr. Woo has tried, his condition has not improved very much.

Today he was diagnosed with clinical depression and required to give up his hunting rifles because he’s been making suicidal threats and gestures.

Mr. Woo is taking a break.  He voluntary admitted himself to a psychiatric inpatient program.

He feels resentful toward his wife and brother who suggested that there was more going on than just his autoimmune troubles.  His wife cries into the shoulder of another man as she feels rejected for trying to help and wishes that Woo would stop yelling at her that she doesn’t understand anything about his condition.  She feels guilty for wanting to go out with her friends and for not having a chronic illness.  She is entertaining the idea of separation.

Mr. Woo’s brother visits him once in the hospital.  He offers Mr. Woo some extra accounting work for his business and wants to take Mr. Woo on a meditation retreat for 3 weeks.  Mr. Woo grudgingly accepts the work but laughs at the idea to go for any type of retreat without the risk of a guaranteed benefit.  He claims that he failed at yoga, “just like everything else”, and that he has the perfect treatment plan mixing biologic pharmacotherapy with a diet infused with Turmeric (which he has bulk ordered from Amazon) and juices made from raw green vegetables only.

Mr. Woo attends a multidisciplinary team session with his psychiatrist, his specialist, a dietician, and his wife.  Mr. Woo walks out of the session and discharges himself from the hospital.  He shouts at everyone in the meeting that they do not care about helping him and that their ideas will make him worse and that his wife needs to cut out her moaning, and no he won’t do couple’s therapy.

Upon leaving the hospital, Mr. Woo checks himself into a motel.  His funds are dwindling as he sits on the edge of the bed washing back narcotic pain medication with a bottle of whiskey.

Mr. Woo is discovered dead by the housekeeper the next day.  It doesn’t appear to be a suicide per se.  It appears that he just wanted pain relief and had been hiding misuse of his medication, pain medication bought illegally, and engaging in binge drinking.  Everything in his system had caused him to stop breathing in the night.

Mr. Woo is cremated.  Two years later his brother marries his widow.  The life insurance company is refusing to pay out.  His former partner has discovered over $26,000 in credit card debt.  Still, every year she runs in a 5 k marathon to raise money for the autoimmune disease research charity.

Mr. Woo died before his four year old son could get to know him.

–THE END–

What the heck was that?!

The above story is meant to be fantastical and is just a piece of fiction.  Yet, I can imagine that most of you have known someone or heard of these similar fates before.  And, maybe, you can see ways that you are like Mr. Woo or perhaps his brother or his wife or his young son.

The point isn’t that we hear a story and we judge Mr. Woo.  The point isn’t that chronic illness and disease are relationship killers or precursors to addiction and suicide.  The point isn’t that natural treatments or conventional treatments are somehow better or worse than another.  The point is not that a meditation retreat would have saved Mr. Woo.  No, none of those make an intended point..

The point I take away from this story is that we, by default, want someone or something to blame.  And yet, that isn’t helpful no matter which person’s shoes you decide to try on.  Maybe, the point is that many little things can build up.  And they usually do.  But, instead of obsession, rumination, and trying to do it right, we come to face that acceptance is the only tangible control we have.

Life isn’t an easy journey.  Chronic illness, be it mental or physical or both, poses many complicated dilemmas that further make life unpleasant and complex.  But I’m here to tell you that, at any point, accepting THIS moment and not taking it too seriously is likely the most positive thing you can do.  I know it’s true for me.

 

 

Pain Tolerance: Musings on …

As I lay here writing this sentence I am in pain.

Correction.  I can feel pain.  Correction.

 

It hurts and I want:

a shot of morphine

 morphine

a big bowl of pasta with meat balls and cheese and a dry white wine

FN_Ina Garten Real Meatballs and Spaghetti.tif

my mother

mother

 

to sleep

to wake up

to do

to not have to do

to fling myself off a moving train

to be bathed in healing light

to scream bullsh*t! at a doctor

(  X  )   all of the above

 

What is pain?  Is pain some psychotic demon throwing lit matches at our nerves?

No.  Pain is a signal.

We say it hurts, what do we really mean?

Is it an ache today?  Does it start small, pulsating, and then radiate outwards like a cat’s tail whip in slow motion?  Cold wind and bee stings upon exposed flesh

 

cats-tail-whip.

Pain?  Are you real?

Yes.  I’m a matter of fact.

Pain?  Why do you hate me?

I don’t.  I am merely saying something is wrong.  If you want to dress this up, here’s the number of a shady guy who does that sort of work:

555-5555

Mr. Suffering, Esq.

 

cat-are-you-done-yet

 

 

 

 

Gray clouds, rain, and no.