Lately I've been plagued with feelings of uselessness. Added to that is the feeling that I'm destroying someone else's life because I have this illness. The sense of guilt I've been experiencing has been intense. I've felt bad that so many people generously helped us in so many ways with this move and I'm not better. In fact, I've been in a bad crash from all the stress which has left me practically bedbound further adding to my sense of uselessness. It's been freezing in here because of the weather and lack of heat so my toes aren't healing as they should creating a sense of anxiety.
I woke up this morning feeling profoundly isolated and alone. I went to sleep last night feeling horribly guilty at everything Daphne has to do because I'm ill. This morning I thought to myself I just don't want to live anymore and seriously considered putting a call into one of those assisted suicide places.
I don't like writing about this. It sounds awfully depressing and morbid but I have yet to talk to a person with this illness who hasn't experienced these sorts of thoughts. The only reason I'm writing about it is because out of this dark night of the soul comes a sense of rebirth. This sort of dark place spurs me into action simply because it's a place I don't want to exist in for very long.
I got up and decided to make myself a fire and sit in front of it and pray. It helped. I started feeling a sense of peace. I then got on the computer to do some research on recovering from this illness. I found two really good sites that spoke to me.
One woman, Jan Blumfitt, described her experience with this illness as similar to being deep in the water with the surface miles away. She writes:
Like everyone who is plunged into the maelstrom that is M.E., seemingly completely out of the blue, I was looking for a "cure". When people said to me that it could take months or even years to recover, it was beyond my comprehension that this could be the case. It was like being deep under the water and the surface was miles away, but I was trying to find the way up there. Each time I tried something, there was all the expectation that this time my head would get up beyond the surface, and then I would find myself drowning again on the bottom, with all the attendant disappointment and desperation that brought.(Jan Blumfitt, 1999)
So I had to alter my way of looking at things. The picture I formed over the months and years was a set of stairs, maybe fifteen or so to break the surface, and another fifteen to step out of the illness altogether. The first fifteen I realised would be the most difficult because I was operating largely in the dark, but once my head was above water and I could see more clearly, the second fifteen would be easier. I had to become very clear in my own mind what I was going to do and why I was doing it, so that I could keep on doing it even if it seemed not to make any difference at all.
I found this very helpful. Jan also made another statement that I thought was great. She said that some people who unknowingly may be on the 14th step might try a treatment like hypnotherapy (for example) which happens to be the treatment that pushes them above the surface. People might say "hypnotherapy cured me" when in reality it was only part of the treatments that helped.
It's also important to mention that this woman experienced a deep spiritual connection in addition to the all the treatments she tried. I'm finding this to be true in all of the people's stories of recovery that I've read. The link to this article and others written by her is here:
http://www.webring.com/hub?ring=cfidsinfo (scroll down to Healing M.E. and Chronic Fatigue Syndrome)
The second website I found was written by a man who got ill became housebound and bedbound and then recovered 4 1/2 years later. He writes:
I remember the moment I came down with what was eventually diagnosed as CFIDS. It was a steamy September day. My date and I were standing in a sunflower field outside of Memphis, waiting for the doves to fly over. This year I had looked forward to opening day with anticipation because the birds had migrated on time and in great numbers. At dinner that evening, I struggled to hold an intelligible conversation. I drove home, went to bed thinking it was just exhaustion and did not permanently rejoin the living for four-and-a-half years.
The following is what I realized over long periods of frustration, that eventually gave way to resignation, that turned into a peace that began to teach me. The hard part was getting to the point where my ego was squashed sufficiently to where it had no influence. At that time I was open to all things internal and subtle and I listened.
Progress was measured in years and seasons. Referring to my journal, I would try to pinpoint what caused this or that setback. Seasons would go by with absolutely no change in my condition. I was discouraged, disappointed and had run out of ideas.
The less I did, the quieter I became, and the more I began to tune into the willow trees, squirrels and passing of the seasons outside my window. It just wasn't worth it to venture out into the traffic and chaos of "normal" life. Everything was so loud and nerve-racking and would affect me so strongly. It would take days before I was able to relax and settle back down after driving in traffic or going to a shopping center. I retreated inward.(Tom Oates, Jr)
After two years of being sick Tom let go of any idea of cure. He began to write down his dreams. He had deep spiritual experiences. He abandoned all external things and began to tune into his own inner nature as well as the rhythms of nature herself. This led him to experience a deep sense of peace.
I am reminded once again that my old ego needs to die in order to create a way for the Self or God to enter. My old ego was shaped by attitudes that are no longer conducive to living given my current circumstances. I believed that in order to be loved or accepted I had to prove myself. Proving myself took a number of forms. At bottom I felt unlovable, a feeling that has been compounded by this illness.
Our culture is very destructive to the inner world. It values the external vs internal, business vs the meandering pace of the soul, material possessions vs spirituality, television vs the imagination, extroversion vs introversion. The phrase "I'm sooo busy" has become synonymous with "look how important I am."
Well, being sick has meant living contrary to the values this culture holds as ideal. Add to that my own ideas that I must be productive, be of service to others, live a rich life full of meaning, write, have a thriving private practice and there exists a recipe for disaster given that I'm ill and the jury is still out as to whether or not I'll ever be able to return.
I need to go inward and focus on developing a rich inner life regardless of what the external looks like and regardless of what the future holds. It's a frightening prospect to think that I may never return to a certain level of functioning.
My old attitudes need to die. After all, death and rebirth are linked.
The other night I was watching Jim Carey being interviewed by Larry King. He's an actor I haven't paid much attention to aside from enjoying his movies but he said something that I've been chewing on. He said "everything that happens to you is the greatest thing that could ever happen to you." Given that I have this illness I thought about what he said. What if this illness was the greatest things that has happened to me? It's not something I want. It's certainly not fun being plagued by such a profound sense of fatigue that I can't even walk around the block, or the chest pain that makes me fear the virus is in my heart, or the wooziness, or the myraid of other symptoms that I experience on a daily basis. His statements made me ask such questions as: What gifts does it have to offer me? How can I transform my suffering? How can I make my own personal meaning from it? And, how can I can I give back to the world in spite of or because of it?
I think the answer lies in looking inward. My pursuit of spirituality has become my highest priority.
I no longer want to die. I want to see what the next chapter brings. The truth is my life is rich. I'm with someone I deeply love, I get to spend my days with 3 wonderful kitties, I have a view of a beautiful tree outside my living room window, I have my books, my ipod, I get to listen to music which is something I love. I get to have contact with a wonderful group of people-Daphne's friends and family. They are truly wonderful, generous, kind, caring people. I have much to learn from them, including Daphne.
I also have the rich experience of a Phd education at a world renowned school. An education which unknowingly prepared me to deal with a most difficult dark night of the soul. It's as if my education not only prepared me to become a psychologist but prepared me to enter this next phase of my life. I met people both there and at the Jung Institute that are famous but down to earth and saw something in me leading them to mentor me in many ways. At the time I thought it was in preparation to become an analyst. But it's also helping me now.
I know I will visit that dark place again and again but hopefully the time spent there will be shorter. I trust though that the dark night of the soul experience will lead to a sense of being reborn. The poem by t.s. eliot comes to mind:
I said to my soul, be still, and let the dark come upon you(t.s. eliot Little Gidding)
Which shall be the darkness of God. As, in a theatre,
The lights are extinguished, for the scene to be changed
With a hollow rumble of wings, with a movement of darkness on darkness,
And we know that the hills and the trees, the distant panorama
And the bold imposing facade are all being rolled away—
Or as, when an underground train, in the tube, stops too long between stations
And the conversation rises and slowly fades into silence
And you see behind every face the mental emptiness deepen
Leaving only the growing terror of nothing to think about;
Or when, under ether, the mind is conscious but conscious of nothing—
I said to my soul, be still, and wait without hope
For hope would be hope for the wrong thing; wait without love,
For love would be love of the wrong thing; there is yet faith
But the faith and the love and the hope are all in the waiting.
Wait without thought, for you are not ready for thought:
So the darkness shall be the light, and the stillness the dancing.
Whisper of running streams, and winter lightning.
The wild thyme unseen and the wild strawberry,
The laughter in the garden, echoed ecstasy
Not lost, but requiring, pointing to the agony
Of death and birth.
And finally, there has been a tune in my head for the past couple of days but the words remained elusive. This morning the words became clear:
In the arms of an Angel, far away from here
From this dark, cold hotel room, and the endlessness that you fear
You are pulled from the wreckage of your silent reverie
In the arms of an Angel; may you find some comfort here