The new country called Heart Disease

My doctor recently compared my uneasy adjustment since suffering a heart attack to being like a stressful move to a foreign country.

I used to be pretty comfortable in my old country, pre-heart attack. I was a healthy, active, accomplished, outgoing person with a wonderful family and many close friends, a meaningful career I loved, a condo renovated top to bottom in a charming leafy neighbourhood, a crazy-cute cat – and a busy, happy life.

Then on May 6, 2008, I was hospitalized with a myocardial infarction caused by a 99% blockage in my left anterior descending coronary artery.

And that was the day I moved far far away, over to a different country. 

Breast cancer radiation oncologist Dr. Marisa Weiss described a similar move when she was, ironically, diagnosed with breast cancer herself this spring:

“Now I have dual citizenship in a country I never wanted to belong to.”

Eve Ensler, who wrote The Vagina Monologues, said this last fall about her own cancer experience during a speech to a women’s conference in Long Beach, California:

“And when I wake up, I am in a new country. Nothing is familiar. Because the possibility of not dying is gone. Because I am now living in the land of the sick. Turns out my being a vegetarian-sober-nonsmoker-activist has not protected me at all.”

And the late author Christopher Hitchens told his Vanity Fair readers about  the arrival of emergency paramedics at his home after he suddenly collapsed one day due to his cancer symptoms:

“Now that I view the scene in retrospect, I see it as a very gentle and firm deportation, taking me from the country of the well across the stark frontier that marks off the land of malady.”

As writer and activist Susan Sontag once wrote:

“Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick.

“Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”

Deported to “that other place” called Heart Disease, nothing around me felt familiar or normal anymore after surviving a heart attack. I was in a profound state of denial and shock. The simplest of tasks – like taking a shower or any other activity that requires lifting both arms above the head - now required a supreme effort and a 20-minute lie-down afterwards to recover.  (See also: Why Taking A Shower Is So Exhausting For Heart Attack Survivors)

I was fatigued and anxious at the same time, convinced by ongoing chest pain and shortness of breath that a second heart attack must be imminent.  I felt a cold, low-grade terror on a daily basis.

And my worried family and friends could not and did not even begin to comprehend what was going on for me – because I could scarcely understand it myself. Sensing their distress, I tried to paste on my best PR smiley face around them so we could all pretend that everything was “normal” again. But making even minimal  conversation felt so exhausting that it eventually seemed much easier to just avoid other people entirely.

Instead of feeling happy and grateful because I had survived what many do not, I frightened myself by weeping openly over nothing in particular. I couldn’t seem to concentrate on anything. I slept in my clothes. I didn’t care how I looked or how I smelled. I had no interest in reading, walking, talking, or getting out of bed. Everything was just way too much trouble.

And every night at bedtime, I quietly (and unconsciously) prepared for my own death overnight.

What was wrong with me?  Why wasn’t I able to just snap out of it?

One day, at about the seven week post-heart attack mark, I finally felt like I had had quite enough of this heart disease, thank you very much. In a fit of pique, I marched around the apartment gathering up get well cards and lovely bouquets of flowers and anything else that reminded me or anybody else that some kind of invalid lived here.  I tossed all of them into the trash, and waited to feel better.

It didn’t work.

Worse, none of this felt like like my real self, like my real life, like my real world. I began to fret that the old me was truly gone. Would I ever get it back? Maybe if I could just return to work, maybe then I might once again feel ‘normal’ again during a time when nothing about this new country felt normal.

It took three long months after my heart attack before I received medical clearance to attempt a return-to-work trial, half-days only to start. By then, I had used up all my vacation days and all my sick time, and could no longer afford to stay home from my public relations position at our local hospice palliative care society.  And I felt absolutely desperate to get back to work.

But I realized within the first week back at the office, after all the ‘welcome back’ hugs and solicitous fussing by my colleagues had faded, about the same time that multiple project deadlines started to pile up alarmingly, that I was simply no longer able to function in my old PR life.

More anxiety, more terror, more weeping, more chest pain. I don’t know how I made it, but I somehow hung on for a full month before my doctor finally ordered me to leave work immediately on extended medical leave.

Leaving work felt almost worse than suffering through the workday stress. As weeks turned into months, my hope of returning to my old pre-heart attack self dimmed as the reality of life in this new country of mine sank in.

Where once I had been competent, I now felt unsure.

Where I had once made decisions with lightning speed, I now seemed incapable of making even the most insignificant choice.

I was seeing my physician on a weekly basis by now, was referred to the Regional Pain Clinic to address debilitating chest pain, started seeing a therapist, and was prescribed anti-depressants to help get me through this state of anguish and despair.

My once-busy life became reduced to what I called ‘one-outing’ days, ‘two-outing’ days, or (rarely) ‘three-outing’ days.  Each outing – a doctor’s appointment, for example – was followed immediately by two hours back home flaked out on the couch in order to recuperate from the bone-crushing fatigue, shortness of breath and chest pain brought on by the outing. Going out in the evenings was almost unbearable, and when we did, I’d have to rest up for hours in preparation, and then I needed the full next day to recover.

The distress of adjusting to such a debilitating change to one’s lifestyle  is hard to describe to those who have never experienced it. Yet there are travel agents and tour guides here who actually have tools to help us along the journey – although I personally never met them.

For example, we know that we have at least 12 measurement surveys available to the medical profession that look at factors like “the search for meaning in chronic illness”.

These surveys have been used for many patients being treated for AIDS or cancer, such as the Psychosocial Adjustment To Illness Inventory or the Meaning of Illness Questionnaire. A 2008 study found, alas, that limiting factors in the success of these tools included “the infrequent use of some of the instruments clinically or in research.”

I can’t help but wonder, then, why these readily available psychosocial tools are not being administered routinely to heart patients during post-MI recovery.

With much backsliding, and a revised cardiac diagnosis of inoperable coronary microvascular disease (MVD), I’ve had to learn through painful practice the fine art of p-a-c-i-n-g throughout each day.  (See also: How Women Can Have Heart Attacks Without Any Blocked Arteries )

I have now found that most days, I can actually function pretty well as long as I remember to balance every single activity each day with an even longer period of rest.

On top of taking a whack of cardiac meds each morning, MVD chest pain symptoms are also being addressed by my cardiologist and Pain Clinic specialists with an innovative non-invasive  therapy called a TENS unit that I wear clipped to my belt all day, every day, its tiny electrodes taped over my heart.  (See also: My Love-Hate Relationship With My Little Black Box). If for some reason this TENS therapy – along with those cardiac meds I pop every day – fails to adequately manage my daily symptoms, Plan B includes a pain management surgical procedure called Spinal Cord Stimulator Implant.

In this new country called heart disease, the culture here demands a profound respect for prioritizing.

This means learning new customs, like putting myself and my physical/mental/emotional health needs first. This is harder than you’d think, particularly for women. (See also: Are You a Priority In Your Own Life?)

It means learning how to take naps, or just sit and have a rest when I need to. It means learning to limit social contact to those who lift my spirits, make me laugh, or bring me casseroles. It means learning how to say ‘NO’ – to Tim Horton’s maple dips and to those ‘energy vampire’ people who can suck the life right out of you.

Here in this new country, I get tested daily on how well I’m actually learning these lessons.

• Some days, I feel utterly discouraged when the ‘old me’ comes barging back out, eager to run around with my hair on fire like the good ol’ days.
• Some days, I feel despair because I can’t function like that old me.
• Some days, I’m distressed to learn that a simple but challenging  customer service issue while shopping can leave me shaking and exhausted for hours afterwards.
• Some days, I forget – and automatically start putting other people’s needs ahead of my own. 
• Some days, I say ‘YES’ when I really mean ‘NO’.

At first it was extremely painful, as a newly arrived citizen in this new country, to learn that those still living in my old “country of the well” – as Hitchens calls it – are doing just fine without me.  My work colleagues have somehow managed to keep the place running perfectly fine even though I’ve now been gone for two years. The world has continued to spin on its axis, even without me being in charge. As the old saying goes:

“The graveyards of the world are filled with indispensable people!”

Residents of my new country take long walks every day, rain or shine, and go to Health Recovery Tai Chi classes on Fridays. Kitchen calendars that once bulged with dinner parties or weekends in Seattle with friends now show appointments with cardiologists and Pain Clinic specialists. Citizens of the new country pay attention to heart-healthy food, attend cardiac rehabilitation, and take fistfuls of heart meds every day. And they nap.

Welcome to the ‘new normal’.

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© 2010 Carolyn Thomas – Heart Sisters www.myheartsisters.org

See also:

• Are You Too Hard On Yourself?
  
• Depressing News about Depression and Heart Disease
• Not Just For Soldiers Anymore: Post Traumatic Stress Disorder After A Heart Attack
• Women Heart Attack Survivors May Be as Psychological Traumatized as Victims of Violence
• Top 10 Tips From the Author of ‘How to be Sick’

Tags: coronary microvascular disease, depression after heart attack, living with heart disease, mental health issues after heart attack, PTSD, small vessel disease, spinal cord stimulator implant for chest pain