living in the moment

I am reaching new depths of living in the moment.

For as long as I can remember, I have been taking photos of family, friends and events. The way I write in my journal to preserve my memories, I loved having visual reminders of my life.

Due to my MS, I now lack the strength and dexterity to take pictures unless I have just the right set up time and no pressure. So taking pictures to document the things I do doesn’t really work anymore.

Now, when I am in the moment and want to photograph whatever is happening, I must sit back and take in the moment fully without documentation. Maybe I will do more writing to describe the things I see, but it’s not as satisfying.

So I am practicing taking in the sights and sounds and appreciating them just as they are. Wishing you many moments of things you love!

"Who Moved My Cheese?" by Spencer Johnson

How do you handle change? I recently read the book "Who Moved My Cheese?" by Spencer Johnson. The most important things I learned were to anticipate change and find a way to enjoy what happens.

There were four characters. They all found a great store of cheese which eventually disappeared. Sniff went ahead, sniffing out possibilities, until he found more cheese. Scurry went ahead without looking until he found more cheese. Hem kept hoping the cheese would reappear, but he eventually realized he needed to go out and find something new. Haw refused to leave the empty site of his beloved cheese, insisting that things would get back to normal.

Having MS has "moved my cheese" more times than I can count. I have had no choice but to move forward and find new ways to do things, new ways to pursue my goals. When my mom was here, she was great at sniffing out what needed to come next. I'm not great at predicting but I'm excellent at adapting.

And it was Hem who discovered that picturing a positive outcome helped him face the changes ahead. I'm trying to do that now. There are changes that my disease may cause that I greatly fear: losing all movement, losing the ability to communicate, and needing so much physical care that a nursing home facility would be my best situation.

If I can't move or communicate, I hope I will find a way to live happily in my thoughts. If I need a nursing home, I hope I can create a space within it where I could be happy (photos of family and friends, great art, comfortable computer set up). I hope these things won't come, but if I can picture them with happiness I think I'll be okay.

Face the changes ahead with a strong heart and spirit. You will be okay, too.

learn to listen

Listen to your #body. If something doesn't feel quite right, it's worth taking the time, even postponing plans, to be sure you are #healthy.

prevent

RE: preventing osteoporosis, non-ambulatory women

Dear doctors,                                                 

I have a concern that I wanted to bring to your attention. There's no way to change the situation for me, but maybe it could be better taken care of with future patients.

Within the last year, I was diagnosed with osteoporosis. Dr. K had been concerned for years about my lack of weight-bearing, but I did not know how to help that.

I wish that someone had told me about standing frames while I was in rehab in 2007. I think that might have helped prevent my osteoporosis. I also wish that we had done a bone scan several years ago. I have been non-ambulatory for 15 years. If we had screened earlier, we might have prevented the problem.

I wanted you all to have this information. Maybe the use of a standing frame could be suggested to women who cannot bear weight. And perhaps bone scans could be done for women after five or 10 years of non-ambulation.

life overall

Do you ever get frustrated about how difficult life can be? If so, look at your life overall. 

I get frustrated daily. But recently I noticed – look how great I'm doing! 

Do you have money for food, clothing and shelter as well as some things just for fun? Do you have people you care about who care about you? Do you enjoy your job? Do you enjoy your free time?

I can answer yes to all of the questions above. In fact, I have an awesome life in spite of my daily difficulties. So I let the anger and sadness have their time, and then I remind myself that I am conquering each challenge.

You can do almost anything if you have confidence and take positive actions. Let the difficulties arise, then step over them to find something that makes you happy. I'm not saying it's easy, but you can do it!

Helen Keller

 “I who cannot hear or see have every reason to sit in a corner with folded hands and weep. If I am happy in spite of my deprivations, if my happiness is so deep that it is a faith, so thoughtful that it becomes a philosophy of life,--if, in short, I am an optimist, my testimony to the creed of optimism is worth hearing.”

Excerpt From: Helen Keller. “Optimism.” 37Fides, 2012. iBooks. https://itun.es/us/PR7KI.l

Find ways to be happy. Ms. Keller did it. I'm doing it. So can you!

life-sustaining abilities

I want to apologize for my saying that you can't die from MS- some upset people. I completely agree that MS can take away life-sustaining abilities. So, yes, you can die from MS.

Still though, that is not going to happen one year after diagnosis, unless there is an extreme situation I've never heard of. I just don't want the public believing that MS is a death sentence.

Most people, before they die of MS, live with some degree of disability and frustration. I was diagnosed 23 years ago and am now quadriplegic. I'm not saying that MS is a happy thing, but it doesn't mean your life is coming to an end right away. I worked for 10 years as a teacher and now enjoy having more time to spend on my photography and writing.

I am frustrated every day, but I love my life.