The Only Way Out Is Through

Yesterday on Facebook one of my Facebook friends--a fellow ME/CFS sufferer--announced that she is no longer going to have hope that a cure for what ails us will be found. Tired of dashed hopes she was committing from that day forward to live in the present moment while appreciating every minute that she is able. I concurred with her sentiment. After a lifetime of illness, it is difficult to put faith in hope. For me at least, it is better to be happy in the moment and be open to what life brings.

A person can give up hope while not giving up. Giving up hope is not necessarily the same thing as being hopeless. Hopelessness speaks of despair not the absence of hope. Giving up hope has more to do with giving up an expectation that what you want--in this case, a cure in our lifetime--will come about. Giving up hope can be the first step toward acceptance and equanimity.

About five years ago this month, I fully accepted that I might not have long to live, and I was A-Okay with that. The Grim Reaper was breathing down my neck. Given my symptoms back then, even as I continued to love life (not just my life but my life with my ex-partner), death would have been a welcome release. Now the Grim Reaper is several blocks away and rarely glances in my direction.

Back then, I stumbled upon a treatment that captured my imagination, and I got a picture in my head of having the opportunity before I died to not only feel healthy but also become healthy for the first time in my life. And the picture was an attractive one. I believe the experimental treatment I am using is helping me recover very slowly, excruciatingly slowly. (Still, I am no longer bed bound for much of the time. I can actually recline in my recliner without finding that exhausting, stand long enough to make a quick meal, and buy groceries without feeling like I am going to die. I have also given my mother my transport wheelchair and rollator.) Until I am functional once again, I can't say with any certainty that the treatment is responsible (even then, while I might feel certain, my experience would probably be seen as anecdotal by most). For this reason, I don't push the treatment protocol when talking with others.

Also, I vacillate between believing I'm going to get well and accepting that wherever I am health-wise in the present moment might be the best I'm going to be. Indeed, if I spent time thinking about having to be the way I am today for the rest of my life--e.g. I am just able to meet my basic daily needs without help, save the help of a wonderful housekeeper and someone to do my yard work--, I could easily fall into despair. For the most part, I'm still housebound, my brain tires easily, I feel as if I am fighting cobwebs to create a coherent thought. And yet, by keeping my focus on the present moment, I am able to capture joy throughout my day most days.

This is not to say I no longer grieve. I have stopped grieving what I lost to disability--that is, my past life. Like my Facebook friend, I accept that these are the cards I've been dealt and it's my job to play them. However, on occasion, I grieve how difficult it can be to have so little energy. (You might recall from an earlier essay that I had to switch from writing two essays a week to one a week because writing two was just too difficult for me, too tiring.) Dealing with ME/CFS is wearing. The ongoing loss of something resembling normalcy is cumulative. I think I'm coping, I feel like I am accepting my reality in the moment, and then, wham! I find myself overwhelmingly tired of being tired beyond what most people can imagine. (Not to mention all the other symptoms that most people cannot fathom.)

Being disabled with ME/CFS is not the first time I've had to deal with cumulative loss. For as long as I can remember, I've struggled with my health, and although I would qualify as someone who had long-term onset of ME/CFS, it was chemical sensitivities that dominated my adult life until my immune system tanked and ME/CFS disabled me. Chemical sensitivities controlled where I went, where I worked, where I lived, what I ate. Doesn't sound like much, however, you'll have to take my word: when chemical exposures make you extremely ill for three to five weeks on end, you will steadfastly protect yourself from exposure... eventually. And you will miss out on a lot of normal things that others take for granted.

I sort of just put one foot in front of the other all the time. I grieved what I could not do--that party being held in a recently painted apartment house, the great job that someone offered me, the basement apartment we had to pass up, etc.--in the moment and moved on. Not that I boohooed or anything. I just felt the sadness and acknowledged my losses.

Then, around the age of 43, WHAM! I discovered that discreet losses could be cumulative. Grief is not necessarily satisfied with in the moment grieving if a condition is chronic. I suddenly found myself grieving the totality of 23 years of knowingly living with chemical sensitivities. (Prior to age 20, I had not made the connection between chemicals and bouts of even poorer health.)

The despair I finally felt was probably not helped by the fact that I used to entertain what I could be doing with my life IF I didn't have chemical sensitivities. For example, I would have worked construction and perhaps have been an interior designer instead of a lawyer, or take the job I was offered just out of law school in 1993. After five interviews, I learned that the job would require a lot of travel, including travel to points around the globe. (Oh my goodness, Montreal, London, Tokyo, Hong Kong, etc.) My employer would have needed to hire someone full time just to work on accommodation issues, and even then, the logistics were just too great to overcome. Over the next five years, I compared the salary of the job I ended up getting to the salary I could have had and registered it as a net loss of approximately $125,000. I was well aware that my life was littered with opportunities that I had to pass on. And my estimated Social Security (and eventually my Social Security Disability Income) reflected these opportunity costs.

Reality frequently collided with my dreams, and at age 43, I was finally tired of it. Like anyone cares, eh? Like the universe goes, "Oh, Claire is tired of it. I guess it's time to release her of this burden." Yeah, in my dreams.

I felt boxed in, as if there was no way out.

Next thing I know, I'm dreaming I'm in an elegant wagon being pulled by a team of beautiful white horses through an underground stone passage way. Suddenly I smelled paint--the VOCs (volatile organic compounds) in paint would cause my brain to swell, clog up my sinuses, swell my throat, do damage to my lungs, reduce my energy to nil, and make me feel like sharp objects were being forced through my veins at various points, causing me to call out in pain for weeks. And all I can think of is "I have to get out of here, but how? I'm encased in stone!" Then, I see a faint light ahead and come upon a wide staircase: a way out. The team of horses balks at my attempts to get them to climb the stairs. They resist me because they know the way out is through the tunnel. And so I had no choice but to calm myself and allow the horses to take me through. Allow nature to follow its course.

When I awoke, I finally understood--emotionally and not just intellectually--that there are no magic bullets in life. There's no getting around, going under, climbing over. There's only through. The way out is through.

I stopped imagining what I could be doing, what my life would be like IF I didn't have chemical sensitivities. There was NO Claire who didn't have chemical sensitivities. She was imaginary. The real me had chemical sensitivities and had to go through what I had to go through. I could resist, I could look for ways out, I could bemoan my predicament, and in the process, I could cause myself more suffering. Or I could accept my fate and go through.

When I became totally disabled with ME/CFS five years later, I grieved no longer being able to contribute. I was that ill--totally dependent on another for meeting quite nearly my every need. (My grief was intense because my life out in the world--as hard as it had been dealing with chemical sensitivities--was now over.) Despite that loss, I have not spent one single moment imagining what my life would have been like IF I had not become disabled. I have ME/CFS; I am disabled. (Don't get me wrong, I have some dreams for the future on the chance that I will be functional again because having a few distant goals helps me stay focused on following my treatment protocol. At the same time, I understand my goals are dreams that may or may not be realized. Who knows what the future will bring? I'll deal with it when it comes.)

Sure, sometimes it feels like life itself is passing me by (not being out in the world can do that to you), but when that happens instead of taking life one day at a time, I focus on taking life one moment at a time. As I noted above, joy is found in the present moment, and I've gotten fairly adept at snagging it. Not a bad outcome considering what I'm going through.