Reading the MS Headlines, from the Inside Out…

??????????????????????????????????????Just some rambling thoughts on a day that has seen some productivity and yet continuing lethargy…

Sometimes … often … I feel like I’m reading about someone else’s disease … not mine … I feel like the odd man out … cognitive issues instead of physical issues … a teacher with no short term memory, no organiation, no ability to remember names, or retrieve words … it can’t be.

I’m a teacher. I went to school forever … have a master’s and more than a hundred graduate credits beyond that. I worked so hard for so long, at the expense of my children and my husband … only to have to retire because of cognitive issues? I write books, or did.. . yet now I can’t finish a novel because I forget, just a chapter later, what I’d read a chapter before.

Does the MS society care that I had to retire because of cognitive issues? This is not a wry, ironic twist in a novel. This is real. I am a teacher. I do continue to teach … I have five students (adults and children) who are learning to quilt by machine … I have vintage sewing machines that I am restoring with Rick’s help to again be working models via people-power hand cranks and treadles … I have a fabric shop now, and meet people who like the things I like … we quilt together, and laugh together, and I am happy with them. The machines are metaphorical … coming back to life … continuing after a hundred years to do what they were created to do, and I am helping them with that. I help. It is who I am.

But still, I miss my teaching colleagues who continue to teach and so realistically have no time to spare or share because they continue to teach. I miss our dialogues. I miss their laughter and stories.

I missed my grandchildren growing up … they are in college now … and I was busy being a good teacher and a good daughter, and didn’t spend enough time with them. I am saddened by that.

I thought I was doing the right thing, taking care of my parents while continuing to parent our son, working full time and taking courses to keep climbing the salary tracks so I could retire securely… but retirement came early, earlier than I wanted, but still too late to be a strong part of my children and grandchildren’s lives … melanoma arose to join multiple sclerosis in commanding my attention and time … and doctor visits, tests, surgeries and therapies have taken over a good portion of the calendar of my life…

My husband and I did the best we could, but was it enough? We are married 45 years this month, and have a house almost paid for, and our small shop that may someday pay for itself and offer us that little bit to make up for what I lost in my pension due to early retirement…

Does anyone really see the invisible side of MS? The fatigue, the confusion, the lack of organization and direction and purpose? Or do they, as my mother always did in my teen years, see only the lethargy?

I’m a medically-retired public school teacher. I was diagnosed with ‘benign’ RRMS eight years ago, at the age of 57, after our parents had passed and there was time to see a doctor about my fatigue and vision.  I worked an additional four years after the diagnosis, but had planned to work at least six, to reach my maximum possible pension. Unfortunately, despite daily injections, my cognitive symptoms progressed, and bloomed into depression. When I was unable to recognize one of my students as he stood in front of my desk asking for a make up test, I realized that it had gone too far.
I knew I needed help, but help was not easy to arrange. It was taking me longer to correct my students’ essays, and weekends were not long enough. What I once could accomplish in twelve  hours was taking eighteen hours. I wanted to hire someone privately to do the record keeping and grading so that I could focus on teaching my students. But after not recognizing my student,  I met with my principal and teammates, and agreed with their suggestion that it was time to take “early retirement.” I had to trust their sugggestion, as I had just undergone a change in antidepressant dosage and was not supposed to make significant decisions until the doctor and I were sure the dose was right. But the team was concerned about my well being, and that of my students. I thought of them as my friends. I still do. And so I retired. 
I don’t think that the MS societies that raise funding for research and DMD improvements have anything to offer patients with ‘benign’ RRMS. My cognitive symptoms continue to progress. I have a Master’s Degree in special education, and more than a hundred other graduate credits beyond that. My education has allowed me to help those who, as school children, experience learning disabilities … slow processing speed, short term memory loss, distractibility, lack of organization, confusion, loss of sense of direction, and being easily confused by multi-step directions.  I taught for thirty years, and helped many students and their parents understand the difficulties and find appropriate compensatory strategies for them. 
And now, I share those disabilities. I know that it will take me much longer to learn and keep new information, and I do my best to stay on track when I take on a task, be it housekeeping, quilting or shop-keeping. I no longer can read long novels – it brings me no pleasure to read and re-read chapter 1, only to have forgotten it when I read chapter 2.
My antidepressant is working well enough that I now, at 65 years of age, have my own quilt and fabric shop, and I enjoy meeting quilters who stop by to share questions. I teach elementary age students to machine quilt. And I am content with my life as it is.
I would be lost without my husband – he is my soulmate – we have been married for forty-five years now, and are enjoying our happily ever after years here at home. We will never have the full pension I worked so hard to provide when his manufacturing profession shut down; but we know how fortunate we are to be together here in our home.
I wish it were easier to admit that we need help with things that are bigger than we can handle together. My husband and I do the best we can, and we accept that it has to be enough. It is not what we envisioned when we were young parents. We once thought we, like our parents, would be doting grandparents. But we were, instead, doting parents to our parents. We had to make a choice, and we made the one that we thought we would not regret, given limited time with one generation racing the clock with the other generation. If faced with that timing again, we would choose the same. It was the only humane choice we could make. 
We had always been the helpers. Now we are weakened by disease and age. We still do what we can, and try to earn a little extra so that we can occasionally hire people to help us do what we cannot do ourselves. Our shops help with that. And our lifestyle helps with that. We have abandoned our long-held dream of traveling in retirement … and we appreciate that we are blessed to be in our home, together… Happily ever after, with whoever chooses to drop by and share our time.
Be well, all. And be happy. It is a choice we all can make. 
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2 Comments

  1. Renee Jones

    I know how difficult it is to have an invisible illness and I’m! sorry that you too are suffering with mental limitations and fatigue. I’m also happy for you that your MS has not left you more physically disabled than it has and you are still able to teach quilting and run your shop. Your story has a happily ever after for you and the lives you continue to touch. You inspire me to be a better person and do my best to be all that I can be. Thank you

  2. You know that it matters to us, your MS community. You are enough and we value you and all there is about you!

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