Falling Down the Rabbit Hole

:: Blog Warning: Conditions Heavy, Proceed With Caution ::  Today's topic is, well, not light.  If you're not in the mood for not light, skip today's offering.

Today's essay is along the line of "Help! I've fallen and I can't get up."  For real.  And to set the stage and let you know how serious I am, I share this from Dr. Marc Loveless, an infectious disease specialist in his Congressional Testimony for CFS Awareness Day, May 12, 1995:  "I have treated more than 2,000 AIDS and CFS patients in my career.  And the CFS patients are MORE sick and MORE disabled every single day than my AIDS patients are, except for the last two months of life!"  One person with ME/CFS has described it like this:

"I may look OK, but I feel like I've fallen down a flight of stairs, rolled into the newly paved (boiling hot tar and sand) road, then hooked behind a truck and dragged a mile. And that's just the tip of the iceberg.  That's how I used to describe my FMS (fibromyalgia). The ME is far worse."

Like many with ME/CFS, I worked myself to the point of near death to assure that (1) I had a roof over my head and food on the table, and (2) my health claims had a snow ball's chance in hell of being taken seriously.


I've always known, given the symptoms that I've had since childhood, that one day I could be totally disabled (note that about 1/2 of people with ME/CFS have long-term onset).  I used the phrase "totally disabled" because I've been disabled most of my life.  That is, I've had to contend with disability to live and work for nearly as long as I can remember.  What I'm talking about here is being totally physically disabled--having difficulty taking care of my daily needs AND losing the opportunity to be in the world of work and the world at large before I had an opportunity to accomplish all I wanted to accomplish.

Well, dash that, my health got in the way of my truly doing most of what I wanted to do, making the doing impossible.  Much of my life was lived in compromise, which can be irritating at times when you're not burdened with many fears and have a spirit that wants to live life out loud.  But, hey, c'est la vie.  We play the hand dealt in life, and if we're fortunate, we play it with joy and we give our all back to life.

Once the body takes a serious turn for the worse, it can be a swift and disorienting slide into total disability.  It was the scariest fall of my life.  And a sad fall at that.  November 4, 2003, the day I had to call my work and tell them I had to stop working, even though I had worked from home most of the time for two years trying to slow the slide, my cousin's beautiful, vivacious daughter Amanda died of breast cancer at age 32.  My loss paled.  And yet, it was still my loss to contend with.

When my health really started to take a nose dive, I couldn't wrap my mind around the implications:  Who would pay the mortgage?  Would we, my ex-X2 and I, end up in an apartment where we couldn't control the environment and where the decisions of the landlord or other tenants might make me sicker and possibly bring a swift end to my existence?  And how would I afford health insurance given that Virginia not only doesn't provide partner benefits, but doesn't allow businesses that are formed in the Commonwealth to provide them?  Even partners themselves are forbidden to make agreements that look like partnerships, having fewer rights than a corporate entity to effect a legal contract.

As I went into the slide toward total disability, I could see that my chemical sensitivities were lessening.  Incredibly my spring-time allergies had not bothered me in about four years after a near life-time of struggle.  So on the one hand, for a couple of years before my energy tanked, I appeared to be getting better, but what appeared to be better was, quite frighteningly, a shift in symptoms due to bodily systems crashing simultaneously.

And, I couldn't bring myself to tell my partner because I could not bring myself to say it OUT LOUD.  The prospect was THAT terrifying.  The thought of saying that I felt like I was sliding down a steep slope while my life's energy slipped away brought on the irrational fear that just saying the words themselves would make total disability a reality.

If I went on believing, as I always had, in my ability to manage whatever life threw at me, then all would be well.  After all, ten years before, I'd lived through two years of extreme tiredness (this was ME/CFS tiredness not the sort of tiredness a healthy person could relate to), without a single moment's break from the fatigue, and I didn't become totally disabled THEN.  And so my reasoning was, why would this serious dip in energy be different?  Ten years before I even made the choice to attend law school while feeling that way because after about six months of feeling like everything was a major physical effort, I resigned myself that how I felt in the moment was how I would feel for the rest of my life.  What else could explain the long-term nature of the fatigue?  And yet, I somehow managed to regain a better sense of physical health toward the end of the 2nd year of law school than I had experienced in my entire adult life (and by then I was 37).

During those two years, though, I had not shared how unending my fatigue was with anyone.  You see, the fatigue and symptoms of ME/CFS were not new; only the length of the time that I felt this seriously diminished energy was new.  And I'd already learned that people just didn't want to hear it.  My attempts at being understood by medical professionals, friends, and family alike left me feeling like a stranger in a strange land.

When you are chronically ill, doctors who can't help you, friends, family, lovers--don't want to hear that you are (1) sick and (2) getting sicker.  People in general are loathe to admit their mortality, and there's a general societal proscription against talking about illness.  Forget that this is our journey.  Forget that others are allowed to speak about their journeys, their triumphs, their successes, their stumbles, their aches and pains.  We are expected to soldier on, silently, with smiles plastered on our faces.

When I tried to tell my mother, who was at the time as healthy as a horse, about the intensity of my fatigue for those two years, she said, "When you feel tired" (WHEN I feel tired?) "just turn your focus to what you need to do and tell yourself how good you feel, how much you want to do what needs doing."  Jeepers, when your own mother won't listen to you.... So you don't tell people that you feel like you're operating in a world of molasses, that your legs feel made of lead, that you experience constant pain.  Despite failing health, a person sliding into disability learns to just get on with life even if that getting on is killing him or her.

I understand the disinclination to listen or why your eyes might be glazing over right now.

Even if you believe that someone you care about is ill, it is incredibly difficult, at times emotionally wrenching, to listen to their grave symptoms when you believe you can do nothing to help relieve them of their suffering.  (I know this first hand because my mother's been ill for nearly 11 years and my brother was ill with AIDS for over 11 years when he died.)

There is something you can do to help alleviate the suffering of people you care about:  You can learn to listen and get professional help, if you need it, to help you cope. As unfair as it might seem to the listener to have to listen to another's pain, it is also unfair to expect someone you love to share his or her journey with a counselor alone.  ALONE.  Locking a sick person up with his or her own thoughts and feelings just to avoid dealing with the discomfort of listening or facing one's own mortality not only puts a wedge in your relationship, it is cruel.  The last insult to a body already insulted by illness.

I've since learned that, despite the effort I have put into being true to myself and confronting my personal shadows as an adult--that is, in turning toward and facing what scares me--, my experience of denial just prior to total disability is not that unusual.

The denial is understandable, however, because early disability means that many people don't have the funds needed to sustain life in a culture that lacks a true safety net.  (This represents yet another reason why partners also don't want to face reality--most families need two incomes.)  It also means not having the years of contribution needed to reap good benefits from the safety net that is in place.  And if you've dedicated much of your life to public service, you didn't contribute huge sums into the system in the first place.  (So I valued people over money; rename me Don Quixote and let me starve to death for such foolishness.  Wait... Is that how we're to deal with the disabled when Social Security is dismantled?)

Philip Simmons, who lived with ALS for a longer than expected period of his life, knew something of falling into poor health while falling with grace.  He wrote a spiritual classic: Learning to Fall.  To my good fortune, I read Learning to Fall, which was published in 2000, twice in the two years I was sliding.  On some deep level, it reminded me of what I knew to be true about life and it helped me accept the inevitable once the crash occurred.  I've read it every spring since.  His first essay, Learning to Fall, is perhaps the best essay ever written.  Exaggeration you say?  Read it, and get back to me.

For me, most of the falls since that fall into total disability have involved other people.  While there was no shortage of things to grieve about along the way on this journey--coming to grips with needing a rollator, needing a wheel chair, needing a tub assist, being bedbound for long periods--, in the scope of things, those things were minor compared to the losses associated with people I cared deeply for.

These are falls that Simmons does not address in his classic perhaps because when he fell into illness and finally his death, he had loving and committed family members by his side.  (If I have one criticism of Simmons book, it is that: Simmons doesn't really address the impact of the falling away of people en masse, but of course, he was recounting his experience with a "legitimate" illness and he and his family moved to another state, which may have eased the falling away of friends because losses could be written off as normal attrition.  It's difficult to know because he didn't write about it.  As criticisms go, there's still a lot to be gained from reading his book.)

Love alone is not enough.  It takes commitment for relationships to survive chronic illness.  For individuals and their relationships to do more than survive--to actually thrive despite the devastation this illness brings to the life that people once knew--, it takes, perhaps, a willingness to be vulnerable together, a willingness to look at the scary stuff that people want to turn their backs away from and flee.  It takes committed collaboration... co-labor.  A joint labor of love.  It is a crime against humanity, IMHO, to expect the seriously ill person to do this on his or her own.

A partner who martyrs him or herself is doing just that, leaving his or her loved one alone and denying the opportunity for intimacy for both of them.  If a counselor is required to help the couple or either partner deal with unfortunate and hurtful realities that chronic debilitating illness brings, then go if the ill partner is able.  And if not able, go alone.

As a result of connecting to the larger ME/CFS and chronically ill communities online, I've learned that I'm not alone in this experience of people falling away.  Many people who are chronically debilitatingly ill experience this.  If they are fortunate to have a few loving, committed people, these losses may be grieved with grace and compassion.  I was certainly on that track for several years because I believed I had loving, committed partner who was there for me, getting my back.

(Note that the falling away of people is true for the chronically ill who have illnesses that appear to "wear" others out because of the chronic nature of the illness and the utter devastation it brings, and particularly true of those who have a poorly understood illness like ME/CFS.  One where the patients are maligned by the very people paid to help care for them, which in turn affects how the media covers and how family and friends react to the illness, and perhaps most importantly, the sort of funding alloted for medical research.) 

The following represents the general collective experience I've witnessed with people who have ME/CFS.

People you have invested countless hours of your life with say things about you and do things to you behind your back in ways that you could only have imagined happening in some Hollywood drama.  And those brave enough to believe and say the sort of things said behind your back to your face become toxic to you because of their ignorance.  People who don't walk away are sometimes turned away to ensure survival because their attitudes and behaviors kill the spirit, the last bastion of strength that many people with ME/CFS find within themselves.

It's not pretty (and I thank God every day for those with ME/CFS and other chronic debilitating illnesses who have been spared the worst of this).  And as much as I would have liked to maintain Simmon's sense of grace throughout this journey, it is difficult to remain graceful yourself when grace is being denied you by the very people who have purported to care for you.  (Not an excuse, but a heavy reality for people already dealing with so much loss.)

As for me specifically, in brief (because the details are too painful), my mother, already ill, and my brother ill with AIDS, lived 3.5 hours away when I took my fall into total disability and the rest of my family, save one cousin I have rare contact with, lives in the U.K.  And then there was my ex-X2 whom I credit for being there for me when I first crashed, and for providing me food and other much needed assistance for four years.  Becoming totally disabled was only the scariest fall of my life, the worst was my brother Michael's fall from life two years after I became totally disabled followed the next year by the death of my childhood nemesis Sandra followed the next year by my ex-X2 leaving me for someone 20 years my junior.

The emotional support my ex-X2 provided me in the first year and the love I felt kept me from drowning as I swan dived deeply into the underworld revealed when a person is confronted with a terrifying life change.  At the time, I affectionately referred to that experience as "falling down the rabbit hole."

For the record, I should pause to say, there are people who have chemical sensitivities and don't have ME/CFS or Fibromyalgia.  CFS and Fibro often go hand in hand, and sometimes in the spirit of togetherness, they form a band with multiple chemical sensitivities and post traumatic stress disorder, which may have less to do with trauma (although I won't deny the trauma) and more to do with the break down of the body's ability to cope with stress.  When my systems crashed, the few psychological defenses I had crashed as well, and all the unhealed hurts of my childhood came rushing forward at once demanding attention.  Really, they had no consideration whatsoever for the fact that I--the grown up Claire--wanted to deal with the fact that I was no longer able to work and my life, as I knew it, was basically over.  I can joke now because my trip down that rabbit hole was emotionally healing.

But that fall down the rabbit hole paled in comparison to the anguish felt over the losses associated with people I had once thought to be true, good, caring, and committed.  The healing from my Alice in Wonderland experience was a walk in the park compared to coming to grips with how people have behaved toward me after I became debilitatingly ill.  This part of the experience has been more like Alice's experience where up is down and down is up and nothing makes sense, least of all your deeply held beliefs in the goodness of others.  Suffice it to say, if I recounted some of of what has happened and what's been said, you would shake your head in dismay that people could be so ignorant and cruel, so incapable of basic compassion.  Well, unless you're a cynic to begin with.  At times, I have felt like chum thrown into a shark tank.

As luck or providence would have it, however, I also had Pema Chodron.  I've been repeatedly reading When Things Fall Apart.   My book is highlighted in every color imaginable and I thank God for Pema.  Her writing, her spiritual insights have been a real blessing for me.  I  have learned to sit for as long as it takes with emotions that need a hearing.

No matter how bleak a picture I appear to paint here, and while I have had to sit with feelings I am not accustomed to feeling (e.g., I didn't experience personal bitterness for the first time until I was 52), I continue to snatch joy during even the worst of times, and on most days, I spend most of the day in joy.  Some things about one's true nature cannot be denied.

More importantly, specific people have come through for me on this journey.  My mother has been there, and my cousins are with me spiritually and want me to be near them physically.  I have a friend I see once a month, an ex-boss who still wants me to work for him, a housekeeper who is dear, caring, supportive, and an all-around good person, and some caring contact with my neighbor.

I have people who love me.  Some with this illness do not.  Oh, they may have people in their lives--family in particular--who say they love them, but their experience of them is not loving.  It's heart breaking.

The people who have been there to help me work through the myriad of emotions that must be contended with given the journey (aside from my housekeeper, bless her heart, and my friend that I see once a month), however, have been the many chronically ill people, with a variety of diagnoses, that I've met online in the years since that great crash.  They own a special place in my heart.  I have met some of the most brilliant and brilliantly funny women and men.  People I would never have met had I not become ill.

We joke about our virtualness, but the emotional and spiritual support and love we provide each other is no joke.  It's very real.

~~~~~~~~~~~~
A sampling of ME/CFS and other Chronic Illness Related T-shirts and such (more found at ClaireliciousDesigns):

I have ME/CFS & I'm not depressed.

Imaginary Illness.  (A ME/CFS and a chronic Lyme version.)

Social Pariah.

My wife has ME/CFS & I care... Won't you?  (Part of a series of T-shirts for the wives, husbands, partners, and friends of people with ME/CFS and for people whose kids have ME/CFS.)

Love is now with this reality.

Love is now with this reality (full saying).

The toughest job I've ever had.

I'd rather be walking.

I don't look sick...