The day came and went, and we are all still here, in the exact same spot.
I haven’t written in months, ever since my father’s passing. It was his birthday this week; he would have been 85. It is profoundly sad that he was so isolated at the end, even in his own mind, a man who I knew as an extrovert. He loved working at the pharmacy, because he met people from all walks of life, from the plutocrats like C. Douglas Dillon and Pierre Lorillard, the owner of Lorillard Tobacco, to the delivery guy from the drug stockist, who only spoke Spanish. Ernie learned a bit of Spanish to converse with him. He made us take Spanish as our language in high school, rather than French, because he was convinced that Spanish would be an important language for Americans to know. He was correct, of course; I remember more of my high school Latin than I do of my high school or college Spanish. (Thank you, Sr. Redempta, wherever you are.)
I loved working at the pharmacy, as well, and for the same reason. I, too, have been an extrovert ever since I was a tiny child. My mother relates a story of taking me with her to a ladies’ party when I was three. I went around the room, shaking the hands of all the women and introducing myself. I have always loved getting in front of a crowd and speaking to them, seeing their faces as they moved into my narrative with me.
Now I am isolated, physically and socially. This disease does not. Not having a license does that. Pain and its attendant depressions do that – the pain especially. All of the members of the CPS Alliance speak of this same isolation. That is why the group of us that have incorporated the Central Pain Syndrome Foundation have chosen “You Are Not Alone” as our organization’s motto. Hundreds of times I have seen new members to the CPSA or the CPS FaceBook page say, “I thought I was the only one. I felt so all alone.” Well, they are not alone. There are millions of us.
When it comes down to it,I am not really alone, either. I may not see many people in the flesh, but I am fortunate to live in an age when the internet has permitted communication between people from around the globe. The FaceBook page, in particular, seems to have a very lively and close group of people, who feel emotionally connected to each other. That may be because we have photos next to each post, and can discover facts about the posters by looking at their pages. There are so many opportunities for me to reach out and connect with other people. The problem is that I am often to exhausted to make the effort, and am frequently in too much pain to even answer a phone call.
Part of the isolation is the structure of my day. Upon awakening after seven to eight hours of decent sleep, I have energy, and can actually do intellectual work for approximately four to five hours. That is the period during which I must write, organize, and plan – in every area of my life and responsibilities, These include the CPSF, the CPS FaceBook page, any pertinent responses to the CPSA, our business, our bills, our home, keeping track of my ten prescriptions, and even our menus. Or finances are in poorer health than I am, and that puts me under tremendous stress. I often feel hopeless to accomplish anything, as if I have no definite path to fix things, and that causes even *more* stress. The stress makes the pain flare. The pain makes my blood pressure skyrocket. My body is so tense most of the time that I cannot determine what is the spasticity and what is just the effect of wincing from the anticipated blow of bad fortune. To discover stress is as life-that shortening as smoking five cigarettes a day is stressful in itself!
I am also alone in my home. My husband and my son are both introverts. Jake stays in his room for most of the day, coming down to do chores if I ask him, or to make dinner. Jack stays in his office most of the time, unless he in out of the house at calls, or watching television in the den. I am no long a television watcher; endless shuttling through the cable channels makes me impatient and annoyed. So I sit in the living room every even, playing an MMORPG with a group of people from all across the world. At least half of the people in my group are adult close to my age or older, often disabled. At least two of them also suffer from CPS, although they didn’t know that was the name of their pain. The game distracts me from my body’s increasingly arduous travail, and the online conversation gives the effect of a cheerful “family.” But the upshot is that the three of us really only are together when we eat meals.
What is increasingly obvious is that my husband has almost no romantic feelings towards me anymore. He is loving in that he cares for me in many ways, working at his tasks, running errands, paying for my medications, but my thoughts no longer interest him. Neither does my body. He has no desires for me of any type. Perhaps it is age; perhaps it is proclivity; perhaps it is stress. My body has changed; so has his. Perhaps it is that I, and this marriage, have disappointed him past caring. But the situation of my marriage is a stress in itself. I still love him romantically, and long to be close to him, but those feelings do not seem to be reciprocated.
All of these are the contingencies of life with which I mut deal. There are some things I cannot control, and some that I can. There are steps that I can take to ameliorate my situation; those are the efforts that give a sense of power. The rest, I must learn to accept without ill will.