Update for today

September has begun, and school friends are busy with classrooms full of new students and all the emotions that come with them. But I’m not there.

It’s not easy to be away from all that hustle and bustle, for within the chaos, there was order. There were rosters full of names to learn, and schedules to be arranged for each. There were curriculum goals to focus plans, and lesson strategies to meet individual needs. There were expectations ~ those of students, and of their parents, and of the administration, and of myself ~ all demanding my time and attention ~ all contributing to the framework of my days.

My schedule now revolves around doctor appointments, and financial concerns enlarged by the extra expense that chronic illness bring into the budget. Some doctors’ co-pays are $20, some are $30, some $35. Some prescriptions are $10, some are less, and some are more than twice that. All are monthly and added into the budget. Without the medical costs, the budget and our income are perfectly balanced. But with them, reductions and cuts have to be made. Discretionary spending is nil. Social invitations that involve expense present a problem.

And so I worry. Worry does nothing, I’ve read, to increase tomorrow’s happiness. Worry only lessens the happiness of today. Rationally, I know that. Emotionally, I try to control that. But presently, I’m feeling more worry, some anxiety, and the return of depression and its own symptoms.

There is more than the budget to worry over. The diagnosis of malignant melanoma carries with it an extra responsibility, and more worry. I have to return to the dermatologist four times a year and ask him to help me locate more trouble. And each site that we identify and biopsy will have to be treated surgically by another doctor. The surgery may be done in the doctor’s office, but it is not casual – it is surgery, and requires at home daily care, and suture removal after three weeks of antibiotics. The surgery itself may take as long as a week, if the first cuttings don’t capture all of the malignant cells. Day after day the surgeon has to enlarge the cut.  The wound remains open (and vulnerable to infection, hence the antibiotics) until the pathology lab finally reads “margins clear of melanoma.” So far, the surgeon has been able to take satisfaction in receiving the okay to close the wound. So far, he hasn’t had reason to biopsy the lymph nodes. So far, he has been able to say as he stitches it closed, “Got it all.”  So far.

And the multiple sclerosis? I stopped the nightly injections a year ago, and until this April I was feeling very positive, very strong, and  optimistic that I’d finally stood up for myself, and made my own decision regarding treatment, and was rewarded with improved strength and health. I walked the five mile walk in March. I’d fallen only once, and gracefully at that. I began a new book, fiction this time. Life seemed worth living again.

Life seems confined now … curtailed by limitations … my energy levels are affected by multiple sclerosis, but further compromised by worry and anxiety. People who knew me before any of this happened knew me as a person who had strength, and composure, and a presence that others valued and respected. I was at the top of my game when the diagnosis came in 2007. I was teaching full time and mentoring younger teachers in English. I had just passed a three hour competency test in World History and Geography, ancient and modern. I was accepted as ‘highly qualified’ by the parent community and our administrators. I accepted the diagnosis and its prescribed treatment on a conditional basis ~ I would take the injections until I retired, believing the vague promise that it would keep me in the game for at least six more years. I would retire with the maximum pension, and it would be enough to pay the bills, and leave a little extra for enjoyment. But it didn’t. By the fourth year, I weakened, and had to make other choices.

I had to compromise, to accept a lower pension, believing that I would then gain a better physical and emotional balance. I retired believing that ‘quality of life’ would improve once I no longer had to meet the demands of a full time career. And for that first semester, life did improve. My health did improve. My energy began to return. My mood lightened. But then four months ago, it all took another dramatic turn.

I am not the strong, capable person I once was. I know that may disappoint some to learn, but it is what it is. The diagnosis of multiple sclerosis seems so long ago. The diagnosis of malignant melanoma, and the recent multiple surgeries, and the sutures, and the ugly scars are not as physically painful and hard to look at as they are humbling and hard to believe. I thought MS was the ultimate diagnosis, unplanned for, unexpected. But there has now been another, and may yet ahead be still more. I am not who I was.

And so I’m posting here, letting people know how I really am. It’s not how I look: whether I look good or bad doesn’t reveal how I really feel. I feel vulnerable, and defeated, and misunderstood. I feel unknown and still carrying the expectations of someone I once was, but am no longer.

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