I can't handle money!

When I had to quit working I was advised to apply for disability benefits. I asked around and checked with my doctor and decided to go for it. No one I talked to had a good story to tell. Knowing that I might encounter resistance from the government I dug in my heels and prepared for battle.

First, I made an appointment with a Social Security counselor. They book weeks in advance but the day for the interview finally dawned. I wanted to make a good impression so I drug out one of my "Marian the Librarian" jumpers and put on my sensible shoes. When I applied my makeup I left off the concealer I call crack filler. I put it on the scar in my chin to give myself the impression that it's less noticeable. After all, I needed the counselor to see the outward and visible signs of my disability. I was counting on the fact that the left side of my mouth doesn't always do what it's told to add to my air of "disabled." Cheesy, I'll admit, but effective.

The counselor was a sympathetic lady who asked millions of questions and recorded the answers on her computer. After the questions I had to run through my litany of surgeries, tests, and limitations. Last I had to sign a document that everything I had said was true. That done, the counselor told me I'd be hearing from them in a few weeks and I left. I figured, okay, that's step one done.

Several more weeks passed and I received a giant brown envelope stuffed with 3 packets of questionnaires that I had to complete and return. These questions were the same ones I'd answered at the Social Security office! I thought, "Aha! It's a trick to see if I lied." The questions were short answer and multiple choice for the most part. Not to worry, I'm a good test taker. I just had to take my time. It didn't take me long to figure out that the questions were repetitive. They asked the same thing about 3 different ways and were meant to assess mental limitations as well as physical limitations. I breezed through the sections about decision making and paying my bills but then they stumped me.

The question was, "How well can you handle money?" I'd already indicated that I could take care of my own finances so I took the question literally and answered at length. I explained that the neuropathy in my hands made it difficult for me to "handle" money. I described the way I dropped paper money because I couldn't feel it in my hands, that I often lost money from my pockets because I didn't know I had pulled it out, that I dropped coins because I couldn't grip them. It was quite an essay. Feeling pretty good about my answers I put the 3 questionnaires in the return envelope and took it to the post office.

It dawned on me the next day. They didn't want to know if I could "handle" money. They wanted to know if I could "manage" money!

Before long I was notified that my disability benefits would begin in February after the obligatory 5 month wait period. I think I set a record! I applied in August and was approved in October. My application was probably the office joke for awhile. "Hey! Look at this! This woman can't handle money!" Maybe my answer gave some bored bureaucrat a laugh because it sure cracked us up. Whatever the reason for the swift approval, mental or physical, I'm in and I didn't have to fight for it.

Through the eyes of a child

As spring dawns my attitude improves. It's been sunny and windy with temperatures in the 60s and 70s for several days. The warm temperatures give me a preview of days to come. They also give the daffodils and tulips at Garvan Woodland Garden what they need to spring to life. Garvan Woodland Gardens is an incredible botanical garden right here in Hot Springs and it's open to the public year round. You can check it out on its website www.garvangardens.org. People of all ages and conditions come from all over the country to enjoy its beauty.

I took my seven year old great niece, Heather, out there Saturday to look for daffodils. We rode in a golf cart because it had rained and it was a little muddy. This little girl is full of curiosity and adventure and I was glad I had her contained in a vehicle. Otherwise she would have had me climbing up and down every little path that shot off the main path. She would ask where we were "allowed" to walk so she realized that some areas were off limits to foot traffic. Kids that age blow me away! I thought she'd be bored but far from it. She kept me on my toes with her millions of questions. Repeatedly, she exclaimed, "This is SOOOO beautiful!" She noticed little signs along the paths and wanted to know what they were and what they said. I explained about identification tags and she insisted we stop frequently to learn the name of what she was looking at. Sometimes she just had to get out of the cart for a better look.

In a week or two the daffodils and tulips will be out in full force and I'll insist she come back. I think we'll walk. It will do me worlds of good to scramble up and down rock paths with her, looking at the beauty through her innocent eyes.

YMCA

In an effort toward self improvement I joined the YMCA. I hate the kind of exercise that requires machines or repetitions but I enjoy the group classes so I go to yoga twice a week. I went to pilates once but the next day I could barely walk. That's a little more hard core than I want. I'm looking for stretch and balance and an overall feeling of well being; contemplative exercise, not sweaty exercise.

I also must consider the physical limitations created by various cancer treatments. Because of the muscle I lost in my neck on the left side I can't move my left arm in certain directions. I can raise it above my head and I can raise it to the back but certain sideways maneuvers are impossible. I learned that if I'm on my stomach with my arms stretched out in front of me I can't raise my left arm at all. That felt wierd. My brain said, "Lift!" but my arm ignored the command. Imagine having your whole body in that condition! The other thing is the neuropathy in my feet and hands. That was caused by 18 months of chemo. My hands and feet tingle like they are asleep. I almost fell on my head trying to do a tree pose because it's hard to stand on one foot if you can't feel the foot you're standing on. So I did what I had to do, I cheated. I put my hand on the wall and held myself up. Eventually I'll wean myself from the wall and do it the right way.

Going to the Wash 'n Go

My condo is too small to accommodate a washer and dryer so I am a weekly regular at the Wash 'n Go. For a shameless people watcher this place is a buffet. Hot Springs is a tourist town and it attracts people of every economic level, nationality, and age.
It also has a major horse racing track and that adds another dimension, the seasonal worker. Trainers, jockeys, hot walkers, horse owners, stable hands, gamblers, and sports writers come to Hot Springs in December and stay through April, when the season ends. This laundromat is across the street from the track so it's the most convenient for track employees who wash more than clothes at the Wash 'n Go. It also accommodates the track workers by designating washers and dryers for their needs. The dryers on the end are labelled "Track workers only" and there are special washers and dryers labeled "Horse blankets only." Horse blankets can create plumbing problems because horse hair, hay, and dirt clog the drains so its a bad idea to wash them in a regular machine.
I was influenced by Cheaper by the Dozen, so I challenge myself to streamline my laundromat experience when I can. I had traditional, clumsy laundry baskets so I searched online until I found hampers with wheels and a handle so I can pull them instead of carry them and I ordered 2. I keep a supply of quarters in a little red bag. My detergent stays in the car. And most importantly, I travel with what my family calls "an anti-boredom kit." It only takes me 90 minutes to do 4 loads but I don't just sit and stare at the wall. I always have a crossword puzzle book, a novel, sometimes a crochet project, and snacks. Add any of these activities to watching the colorful people already there and my 90 minutes fly. And this is the best part, Sonic is next door! Anything is bearable with ice cream.

Why retire?

For me, retirement has been a huge adjustment. We all talk about it, plan for it, look forward to it and then BLAM! It happens. I didn't expect to do it so early but circumstances and my health made that decision for me. When I retired from my school job I already had a job to step in to. Even better than that, the job was in the same town where I'd taught all those years so I didn't have to learn much of anything new. The kids I had known at the high school were now the adults I served at the public library. I had gone full circle and it was so satisfying. Teachers can't always know what influence they have on the lives they touch but I had the rare privilege of seeing the end product in many cases.

The first six months of 2006 did me in. I had surgery in January, surgery in February, and throat dilation in March. My speech and my ability to swallow were seriously compromised. Not being able to swallow led to weight loss and that contributed to fatigue and depression. My sister bought me a Magic Bullet blender and I drank gallons of Boost laced with bananas and any other fruit I could think of. Solid food was pretty much out of the question. I choked so easily that I kept everyone on edge. Even with all this, I had a trip planned to Boston in March and I was determined to go; another selfish move. A more considerate person would have stayed home. As always the ladies I traveled with were great. We'd been down similar roads and they knew I would work hard not to hold anyone back. I was able to keep up for the most part but meals were trying. One of the women had to do a Heimlich maneuver in the food court of a big Boston mall but we were prepared for that eventuality and we pulled it off without any hysteria. The secret is not to panic and for me, not to eat rice.

By July of 2006 I was exhausted. I had not given myself time to recover from the operations I had had earlier in the year and I paid for it. Everyone saw it coming but me. Have I mentioned that I'm hard headed? The pure hard truth of it is that my health has improved drastically. My speech is intelligible and I can swallow solid food. I've gained a little weight and I have a better attitude. I volunteer at a local botanical garden and I go to the YMCA for some much needed exercise. I spend lots of time with my family and I'm free to run errands in the daytime. I can say that I feel myself adjusting but I can also say, it hasn't been easy.

Thank You

I've shared hospital rooms with people who had to take a bus or taxi home when they were discharged. Imagine that if you can. I can't. My family is all about taking care of one another. At the first hint of crisis we gather. I've never driven myself to the hospital and I've never gone into surgery without my family around me. This is serious business. The things that can go wrong are unfathomable. I am surrounded by them when I go to sleep and they are there when I wake up. There were times when they waited as long as 14 hours. We don't know how to do it any other way. The credit for this phenomen goes to my parents. They raised us to work as a team. We are friends who enjoy one another's company. In today's climate of fractured families this is a remarkable achievement.

Psalm of Life

I was required to memorize this poem when I was in 10th grade (1966?). I also memorized Thanatopsis and Man with a Hoe but I don't remember one line of either. But this poem by Longfellow hit me like a ton of bricks. That was over 40 years ago. I guess you could say it's my outline for life. Over the years this poem has helped me steer a course. I can't remember a time in my life that it did not help me stay on track and keep me moving forward.

Henry Wadsworth Longfellow (1807-1882)

A PSALM OF LIFE
WHAT THE HEART OF THE YOUNG MAN SAID TO THE PSALMIST

Tell me not, in mournful numbers,

Life is but an empty dream ! —

For the soul is dead that slumbers, And things are not what they seem.
Life is real ! Life is earnest! And the grave is not its goal ; Dust thou art, to dust returnest, Was not spoken of the soul.
Not enjoyment, and not sorrow, Is our destined end or way ; But to act, that each to-morrow Find us farther than to-day.
Art is long, and Time is fleeting, And our hearts, though stout and brave, Still, like muffled drums, are beating Funeral marches to the grave.
In the world's broad field of battle, In the bivouac of Life, Be not like dumb, driven cattle ! Be a hero in the strife !
Trust no Future, howe'er pleasant ! Let the dead Past bury its dead ! Act,— act in the living Present ! Heart within, and God o'erhead !
Lives of great men all remind us We can make our lives sublime, And, departing, leave behind us Footprints on the sands of time ;
Footprints, that perhaps another, Sailing o'er life's solemn main, A forlorn and shipwrecked brother, Seeing, shall take heart again.
Let us, then, be up and doing, With a heart for any fate ; Still achieving, still pursuing, Learn to labor and to wait.

Fun with Tubes and Drains

Buried just under the surface I am a 13 year old boy who has a morbid fascination for gross stuff and head and neck cancer is gross. Of course, gross isn't any fun without a reaction. We expect our body fluids to stay inside our bodies but when we have head and neck cancer we learn to accept otherwise. Unfortunately I learned I could get a laugh and I admit I'm shameless. I'll always go for the laugh, the cheaper the better.
The hole in my palate got some good laughs. I could spew a glass of milk out of my nose! I'm not kidding. Chunks of food would come out if I sneezed while I was eating. One day I blew a scrambled egg across the kitchen. Torie, my niece, loved that part. I took the obturator out of my mouth before going to bed and cleaned it and put it in a glass of water, like dentures. If she was with me, Torie would stand by the sink and watch. I kept a little flashlight in the bathroom so we could look at the hole together and marvel about what might be in there. What little kid wouldn't love that? Dr. Suen made the residents and interns look around in there too. Not every patient offered an unobstructed view of a sinus cavity. I'm a bit of a sponge and Dr. Suen is always instructing so I picked up some anatomy over the years.
Then there were the drains. Drains are plastic cups attached to small tubes that are sewn into an incision to gather the gross stuff that comes out of a wound. The object is to measure the gross stuff at intervals and when the cup stays empty for x number of hours the drain can come out. If the drain was in a large incision I stayed in the hospital until the cup didn't collect any gross stuff. If it was a small incision I could go home with the drain and take care of it myself. You know I shared every chance I got.
An NG or nasogastric tube is a real ice breaker. This bright yellow tube threads through the nostril and into the stomach. Mine was for food, medicine, and water until I healed enough to swallow. I poured cans of liquid nutrient into a bag, hooked the bag to a gravity pole and fastened the end of the tube to the bag. I called that eating. Eventually, to entertain myself, I experimented with other liquids like coffee and beer. This tube was highly visible because it literally hung out of my nose. To keep from snagging it on something and dislodging it I hooked the tube over my right ear and let it dangle down in back. I was going for casual but smart. I refused to hide for weeks at a time while I healed so my tube went everywhere I went. People worked so hard to ignore it. Bank tellers, cashiers, people in the grocery aisles became preoccupied with something on the floor or over my head. Not so with little kids. They stared with frank fascination and curiosity. If the parent seemed receptive I'd explain why I had a yellow tube hanging out of my nose, if not, the kid and I just acknowledged one another with a nod and a wink.
This approach doesn't work for everyone. Some things are just not funny but I know that I have to find humor, no matter how grim the situation, before I can cope. Without laughter I'm lost.

"HATS ON TO MS. SIMMONS!"

Any kind of head wear was expressly forbidden at Bryant High School so my daily caps gave the kids a kick. One morning I was going in the front door and I saw a girl in a cowboy hat. This is the south and kids wear cowboys hats on a regular basis, but not to school. I told her she'd better lose the hat before class or she'd be in trouble with somebody. Being a sweet kid she said okay and I went into the building. There was another kid wearing a hat. Then there was another one. As I looked around I saw that everybody was wearing some kind of hat or cap, even the teachers! I was swept down the hall in a crush of hatted people and stopped in front of a huge banner taped to the wall. "HATS ON TO MS. SIMMONS!" It was about 12 feet long and signed by the faculty and the student body. They stood around me cheering. For once I was speechless. Finally I was able to thank them for everything they'd done for me. The entire day felt like a carnival. The local newspaper came to school and interviewed me about this terrific tribute. One of the TV stations came and ran a spot on the evening news. A picture of me and my banner made the front page of the paper but more importantly, adults were allowed a glimpse of what I saw all the time; teenagers doing for others. Kids I'd never talked to came by to wish me well. Some told me cancer survival stories about themselves or their family members. They all hugged me. I was enveloped in positive energy that I needed to propel me through the next several months. "HAT DAY" was officially over at 3:30 that afternoon but we moved the banner into the library and put the photos and poems on the bulletin board where I would be reminded of all the love that surrounded me.

Teen Angels

Teenagers are the best. They don't get the credit they deserve. When I started chemo in the winter of 2001 kids came out of the woodwork to share their stories and cheer me on. My treatment was a 3 day hospital stay every 3 weeks. They felt more like 3 years every 3 minutes. I'd almost start feeling better when it was time to go do it again. I went to work as much as possible during this for selfish reasons; I needed those kids. They were all so alive and their energy was contagious. I derived strength and determination from just being around them.
Before I stopped wearing my wig the kids made it their business to monitor my appearance. Because the wig was itchy and bothersome I was always digging at it. Of course, that made it crooked or shifted it. It was common for some kid, usually a boy, to say to me, "Stand still, Ms. Simmons. You've knocked your hair crooked." He would then gently tug it back into place and go on about his business.