It was 4:00 in the morning, when my mother was awakened by an intruder in her assisted living bedroom. It was pitch dark, and the man was in a wheel chair, ramming into everything and scaring my 97-year-old mother to death. How did you get in here, she yelled, as she struggled out of bed. Get out of here! He did leave, but Mom was so shaken that she needed medication to get calmed down and back to sleep. Youd think that when youre paying over $5,000 a month for assisted living, you shouldnt have to worry about something like this. When I went over there later that day, it was confirmed that this did indeed happen. It was not a bad dream, as I had hoped. According to the housekeeping staff, the answer to my question, How could this happen? was that apparently, the door to her apartment wasnt locked. The more important question is, What is going to be done to keep this from happening again? Then theres the whole issue of why this man was wandering around at 4:00 in the morning. Obviously, he was a resident and had become disoriented, but why didnt anybody notice him?

Being 97 with vision loss, hearing loss, constant pain, and loneliness is enough without having to worry about being safe from intruders. Most of the time, Mother is well cared for, but an incident like this is hard to forgive and certainly hard to forget.

After speaking with someone in charge, I learned that she had not been informed about this. Of course not. Communication in this place is one of their many weaknesses. I was told that precautions would be taken to make sure Moms door is always locked. This is just another example of why anyone in a nursing facility, whether it is a hospital or a nursing home, needs an advocate.

Audio Description

Its been forever since I shared a bucket of popcorn with a friend at a movie theater. Thanks to Accessible Arts of Central Ohio, and an audio describer named Adam, I was able to enjoy Silver Lining Playbook right along with my sighted friend Dan, and Dan didnt even have to annoy the people seated around us with whispered descriptions of what was happening on the screen that wasnt audible. I held a little receiver in my lap with an earpiece in my right ear, through which I could hear Adams brief, well chosen, and pertinent words. In one scene, the main character was running down the street in the dark and the rain, which wasnt evident through dialog or sound effects, but Adam said in my ear, running in the rain. Its dark. Had I not had that description, I would have been left wondering what was happening. And then there was the dance scene, which, without audio description would have been just loud music. There are some blind folks who prefer not to be filled in with information. They prefer to let their imaginations take over. These are usually folks who have grown up as a blind person and were used to not having this service, so they think they dont need it. I, like most visually impaired people who have seen earlier in my life, am grateful to be able to enjoy the same movie that everybody else in the theater is enjoying. This is especially crutial when there is laughter. A good describer will view the movie at least once before they describe it. Adam had seen it 9 times, so he was well prepared to fill in the missing pieces before the laughs, so I could laugh right along with the rest of the audience.

Accessible Arts is the non profit organization that arranges for audio description of movies, plays, musicals, and other live events. The describers go through rigorous training. They must choose their words carefully and try to fit them in during pauses, so they dont talk over the actors lines. They are paid a small amount, but its not about the money. Its about making theater accessible to people who are visually impaired. Everyone associated with Accessible Arts is a volunteer, from the ones who choose which movies will be described to the kind folks who hand out the receivers and assist visually impaired patrons to their seats.

Not every movie is described. Accessible Arts makes it happen about once a month. Thats not ideal, but its far better than it was even a decade ago. The problem is that not enough people know that this service exists. For each one of us who went to that movie last night, there were at least a hundred others who could have benefited from Adams descriptions. Movies arent just for sighted people anymore.

This is the Way We Iron Our Clothes

You cant choose the iron in Monopoly anymore, since its been retired. I never liked that game, so this fact doesnt affect me at all. But the iron as a game piece might have been the only reminder that such a household tool ever existed. In time, our descendents will see an iron in an antique store and wonder what on earth it was used for.

The iron and the ironing board evoke 2 memories from my childhood, both of them pleasant and both of them treasured.

When I was a little girl, my cousins and I spent summers at our grandmothers cottage in southern Indiana. Cottage is a euphemism for this tiny clapboard house, with no electricity and no running water. The memories made in those summers in that little house could fill a book, and maybe they will someday. Once a week, Grandma carried the dirty clothes down through the woods to the spring. We kids would carry the soap, the washboard, and a big wooden spoon. Grandma built a fire under a huge pot of water, and thus laundry day began. The next day, Grandma would heat two irons on the wood stove in the house. They were heavy things, actually made of iron. While she worked with one, the other one would be kept hot on the stove. As the day wore on, little dresses, shirts, and blouses hung on hangers from every doorway, curtain rod, and shelf in the house. The heat from the irons mixed with the steam from the sprinkles of water doused on the clothes produced one of my favorite fragrances in the world, freshly ironed cotton. Nothing feels cleaner and crisper than slipping on a cotton blouse, still warm from the iron, unless its slipping between freshly ironed sheets. Who even irons sheets anymore?

Later, as a pre-teen, I was allowed to iron pillow cases and handkerchiefs. Allowed? Yes, I loved to iron. Just like shoveling snow or raking leaves, ironing gave me a sense of accomplishment, as I started with a damp and wrinkled piece of cloth that I made smooth and dry. I liked being able to see the results of my efforts. On sunday afternoons, my mother and I would spell each other at the ironing board in the basement. Wed fill a bowl with potato chips and dip, pour 2 glasses of ginger ale, put some classical music on the high fi, and spend a couple of hours bonding as mother and

daughter. One of us would sit at the bar, munching and sipping, while the other would take her turn, plucking one of the neatly rolled up dampened bundles from the clothes basket. My mother worked outside the home, and most evenings were spent on homework, but that shared time with the ironing was our quality time. When 2 people share a task, its a great time to share stories, problems, plans, feelings, and dreams. Its also a great excuse to eat chips and dip.

Next Step in Recovery

The doctor-go-round is finally slowing down and will soon come to a stop. Five weeks ago, I had spine surgery to end the sciatic nerve pain that has been wrecking my life for the past 20 months. Yesterday I saw the surgeon for my post surgery visit. Do I have your blessing to resume my normal activities? I asked him. Yes, he said, Unless your normal activity is carrying around concrete blocks. Ha ha When I started listing all the things I was eager to get back to, like brisk walking, lifting weights, cycling, and swimming, he did a little back pedaling. Maybe it would be a good idea for me to do some physical therapy. It was as if I was trying to skip off the doctor-go-round, and someone grabbed me by the collar and said, Not so fast little girl. The medical profession is not done with you yet. We need one more shot at your money. But seriously, I think its a good idea. I need someone to tell me not only what I should not do but also what I should do to hasten the healing. Obviously, jumping onto a treadmill and running for an hour is not the answer, but neither is it sitting around all day, trying not to bend, fold, or mutilate.

When I got home in the afternoon, I actually bent over to pick up Pippens bowl, and sure enough, it didnt hurt. Lets see. What else can I try? Oh right. I have to go see a physical therapist.

So today, I was happily lying on a moist pad with little electrical thingies tingling my back, when the therapists office manager came to me with an apology. Oh no, here we go again. I knew what was coming. Nothing could go this smoothly. It seems that the insurance company, which has been nothing but a pain in the anatomy, requires a referral from my primary care physician. This ordinarily wouldnt be a problem except for 2 things. First, my primary care physicians office cant seem to make that referral process work, and secondly, they fired me as a patient, because I was too much trouble. Oh yes, they fired me. It might have something to do with my saying Im sick of your incompetence. To add insult to injury, this office manager called that doctor, even when I told her that I am no longer their patient. Im actually between PCPs, because I couldnt get in to see my new PCP until next week. So, this means no physical therapy until I can get a referral from my new PCP. Shes just going to love this. First thing out of the shoot, shes going to have to deal with Aetna and their cumbersome authorization hurdles to jump. And to add another frustration, this office manager says she has never had this problem before. Nobody else has ever had to have a referral from their PCP. Always before, patients only had to have a referral from the surgeon. Only me. Go figure. Again I say, will this ever end?

First Place Trophy

On Saturday afternoon, I walked into my mothers assisted living apartment and handed her my trophy. It was as if I were 10 years old, presenting my mom with my soccer or cheer-leading or baton-twirling award, but she was thrilled, as was I. It was the trophy for first place in the toastmasters speech competition in Area 22. As the winner of this level of the contest, I am qualified to compete in the Division contest on March 16.

When I told my daughter Kara that I was planning to participate in the club level of this contest last Monday, she asked me, Are you sure youre up to it? Its only been 4 weeks since your surgery. I replied that it was time for me to think about something other than my back and my mother. I was boring myself.

So, I wrote the speech a few days before, using sections of a keynote speech I had presented last spring. Then I sent it to my friend Ted Janusz, who is a professional speaker and to my friend Lynda Bragg, who is a retired speech and drama teacher. They both loved it, which was a huge boost to my self esteem, and they both had suggestions for improvement, which was a huge help in my success.

One of the things I love most about Toastmasters is that we all want each other to succeed. We are gracious winners and gracious losers, but we are all winners, as tright as that might sound, because we all grow in the experience. In the end, we are all better communicators in every aspect of life.

While I am often annoyed at my mothers attachment for things, so much so that her apartment is cluttered with them, I was glad to have the perfect spot to display my trophy. Displaying it in my living room seems ostentatious, but displaying it in my mothers seems the right thing to do. Besides, and I hope this doesnt sound presumptuous, Im holding out for the one at the Division level. Meanwhile, its practice practice practice.

On the Mend, Maybe

First, I apologize for being silent for the past week. It seems that trying to heal from spine surgery has taken my full attention and much of my energy. Yesterday, I was hopeful that I might have turned a corner toward recovery. I found myself accidentally bending over, but with no apparent consequences. A good sign, I thought. I had been warned by the nurse practitioner before the surgery not to bend over and not to go up and down stairs. I religiously tried to obey her instructions, except for the stairs part. Its impossible to go anywhere in my house without doing stairs, but I did try to minimize the number of trips, trying to think of everything I needed to do or take to the other level before each trip up or down. Still, the progress has been depressingly slow.

Today, however, my sweettooth yearnings for oatmeal cookies drove me to test the suspicion that I was on the mend. I thought I was prudent in performing this previously simple task in stages. The night before, I found the recipe, sometimes the most time consuming part of the process. First thing this morning, I got out the butter to soften in the bowl. Hours later, I prepared the dough, but in spite of my calculated and measured efforts, by then, my back felt like it had been broken. I took a break for lunch and resumed the process by baking only 2 dozen of the cookies, putting the rest of the dough in the fridge for tomorrow. I was beginning to wish that I had not promised my mother that I would be coming over to play Scrabble with her tonight. Was I carrying this dedicated daughter thing a bit too far? I packed up all the supplies I would be taking to her, clean laundry, her favorite goodies from the grocery, and home made cookies, and prayed Id get a driver who wouldnt mind lifting the suitcase into the van for me. Fortunately, that prayer was answered. However, when we drove through the parking lot, and we hit some huge potholes, again, my back protested, and I worried that maybe it was wishful thinking that I was on the mend. I see the surgeon on Tuesday, and Ill find out then if this is normal or something is terribly wrong. Stay tuned for the next episode.

What is the Light in Ski for Light

As high as we were on Race Day at SFL, with the national anthems ceremony, the thrill of crossing the finish line after skiing our hearts out, the leisurely skiing afterward, the awards banquet, the dance and the parties, we were just as low on the following day, Sunday. The first bus back to the airport often left at 5:00 in the morning, which meant schlepping ski bags and luggage around in the middle of the night, sad goodbyes over a quick cup of coffee in the subdued morning melancholy. Then came the arduous trip home, which involved a bus ride and up to 3 flights and 2 layovers and dealing with unenlightened airport personnel. The difference between the SFL world and the real world was evident the moment we entered the airport. People in the real world dont speak to each other in an elevator. People in the real world dont offer assistance to a blind person in a strange restroom. They stand and stare. People in the real world assume you cant do stairs or an escalator. People in the real world cannot imagine the respect, the laughter, the kinship we shared as an SFL family.

After my first SFL, I went back to work the very next day. By noon, I had to go home sick. Not only was I exhausted, but I was sick at heart. It was the classic back to the real world syndrome. Each year after that, I included the Monday after SFL as part of my vacation days. I needed to decompress.

3 years later, I was able to put into words what I felt at SFL in a poem. Here it is.


Ski for Light is a state of mind,

A slice of time out of the context of life,

A transcendental world of timeless relationships

That begin and end in the space of a week,

Yet last for a lifetime of Ski for Light weeks,

Where everyone accepts me as I am,

And everyone expects to be my friend,

To help me find my strengths,

To help me say “I can,”

To mirror my smile and extended hand,

To share my zeal for life and all that it can offer,

To taste the sweetness of trying and doing,

To sip from the common cup of conquered fear,

And toast the glory of freedom,

To celebrate my triumphs,

To teach me how to laugh again,

To heal my wounds of frustration and doubt,

To strengthen my sense of self,

To light the flame of independence,

And fan that flame each time I think of Ski for Light,

And like the flame of the Olympic torch,

It keeps alight throughout the year,

So I bring it with me when I return,

And proffer it to someone new,

Someone like you

Who needs to ski for light.

Ski for Light, the Race

I dont want to race. I just want to learn to ski, I recall telling my guide that first year I went to Ski for Light. Just managing to stay upright on those long skinny sticks on those frozen trails was enough of a challenge for me. Yet, on race day, the last day of SFL, there I was, wearing a racing bib, shivering with the cold and the excitement as I waited my turn to push off and begin the 5 K rally. At the beginning of the week, I had never even seen a pair of skis before, and it took me 4 days before I could get off the 1 K loop. I was glad that the 5 K ralley was not a race, because all I wanted to do was do the distance. Still, as I approached the finish line, I could hear the cheers, the ringing of cowbells, and the encouragement of the announcer on the loud speaker. I couldnt believe they were still out there, cheering me in. I might have been the last one to cross the finish line that day, so in later years, when I really was racing the 10 K race, I would hurriedly grab some water, put on a warm jacket, and stand at the finish line to cheer in the new skiers. Theres nothing quite so emotional as the moment you and your guide give it all youve got to shave off a few seconds, and then slow down to a stop and receive a hug from the volunteers at the finish line who loop a metal over your head. Everyone gets one. It doesnt mean you won the race, but it does mean that you did your best, overcame your fears, met your challenges, and proved that If you can do this, you can do anything.

At this point, Id like to invite any SFL guides who read this blog regularly to post a comment. It would be great to hear how you feel on a race day. Ive experienced race day at SFL 25 times, so I have 25 stories, but Ill save them for another time, maybe next year.

After the race, everyone goes back to the hotel to pack and get ready for the awards banquet, everyone except for a few of us who stay and ski the course, just for the joy of skiing. The pressure is off and the trails are virtually empty, so we can relax and just have fun. Its a bitter sweet time for me, because I know I wont be skiing again until the next SFL, and I wont be seeing these wonderful friends for another year.

The race was yesterday, and although I wasnt part of it, my heart was there. I pictured the start of the day, with the flags displayed from all the countries represented. I heard the national anthems of each country being played and a few voices raised in pride. I heard the muffled applause from mittened hands. I smelled the wax being applied to skis with an iron. I felt the good cheer as skiers and guides high fived one another as they stepped into line for the start of the race. I heard each teams names announced as they each in turn were given the signal to start. Even before the last team took off, some of the teams were returning from a fast tour of the 10 K course, no doubt led by a Norwegian. I tasted the hot chocolate as we cheered in the MIP skiers, those using specially designed skis for people who use wheelchairs. Talk about inspiration. I wonder if they too get tired of being called amazing. If they can do this, they can do anything.