Carnival of MS Bloggers #44

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

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HOPE

A special story shared today by Judy who blogs at Peace Be With You.

Hope got up that morning and breathed in the sunshine air. That’s what she called it—sunshine air, that quality of air which shines brightly and thrills with promise, of shadows remaining distant, of strength staying resolute. So she breathed in the sunshine air and thought, Oh, my, this is the day that the Lord has made. Let me rejoice.

She was heading to the kitchen to prepare her morning toast when she tripped over a—what did she trip over? She looked down, but the tile floor was as smooth as ever, no stray objects around her that she could see. Must have been daydreaming already, she thought. I’d better get my act together so I can go out and enjoy this sunshine air.

The first thing she did when she walked into her blue-and-white kitchen—hey, weren’t those hand-painted, blue willow plates on the walls just great?—was to pull open the French doors to the patio. She stood at the threshold, her hands propped high above her on either side of the door jamb, and breathed in deeply. Jasmine, even a hint of morning dew, filled her lungs. Promise, that’s what this day reminds me of, she thought. Of how a day is always the beginning of the rest of your life.

She walked back into her kitchen, pulled out two slices of oatmeal bran bread and the jar of mango preserves bought the day before at Morning Glory Farms. After putting the bread in the toaster, she turned the lid of the jar to open it. Except it wouldn’t open.

“Drats. I should have bought that jar opener I saw at the store yesterday.”

It had seemed like such an unnecessary thing to do at the time. $13.99 might not seem like a lot to others, but she had decided to save every penny she could toward a vacation hiking up the Costa Rican mountains with other members of the Audubon Society, and $13.99 was 1,399 pennies.

She tried again to open the jar. The lid wouldn’t move. Her hand kept giving out at the wrist, as if it lacked strength. Hearing the sound of rustling leaves coming through the patio door, she remembered—this is a day of sunshine air. Then she reached into her pantry for the strawberry jam she usually used except on days like today when promise seemed especially worth celebrating.

That’s okay, she thought. Strawberry jam is good enough to celebrate sunshine air. Anyway, it also came from Morning Glory Farms, and everything they produced was a miracle.

She went to place the jar on the counter, but missed the edge. The jar dropped to the floor, red jam spilling onto her white tile and splattering her cabinet doors, shards of glass everywhere. After gazing at the broken jar on the floor for long moments, she leaned over to pick it up, but lost her balance and landed on her hip on the hard floor. In the stunned moment after landing, she thought, what just happened? Then she quickly examined her arms and legs for cuts. Somehow, miraculously, she had fallen where there was no glass. Only a bit of jam stuck to the hem of her short, frilly nightgown.

“See, I told you,” she said, using her elbow to get off the ground. “This is a day of promise.”

After wiping clean the mess on the floor and cabinet doors, she picked up the edge of her nightgown, and rinsed the jam off. Her toaster had long since rung to tell her the toast was ready so she threw out the hardened slices, dropped two more in, and went looking for something to spread on her toast.

Butter, isn’t that what most people put on toast? But did she even have butter? She never used ordinary butter, not even for cooking. One thing she had always been proud of was how she ate right, exercised, and kept a good attitude.

She opened the refrigerator door.

No butter.

The toaster rang.

She gazed at the toaster, heard the leaves rustling behind her, and sighed. Then she squared her shoulders and reached for her toast. She slid the slices onto a plate and strode to her outdoor patio table. There she sat, breathing in the sunshine air and smiling before she bit into her dry toast. That’s when she noticed the pamphlet on the adjoining chair. She thought she had thrown it out the night before, but apparently not.

The designer who laid out the pamphlet’s artwork must have been a cheerful sort—or not knowledgeable or smug or superior or something—because he chose uplifting colors. Hope stared at the pamphlet until she remembered her toast was now growing cold. She bit into the dry toast. The crisp edges seemed to scrape across the delicate upper skin of her mouth. Her skin in general seemed awfully sensitive these days, and she reflected on how skin was supposedly the largest organ of the body, which meant she was just one big sensitive organ.

She lay the toast back on her plate. I probably should use paper plates from now on, she thought. Less risk if I drop them. From the patio, she scanned the blue-willow plates she herself had hung in her kitchen. It didn’t seem likely she could add another, not just because of the money but because she’d better donate her ladder to someone who could actually climb it.

She picked up the pamphlet from the adjoining chair, gazed at its aqua and apricot tones and thought, the designer should have made sure the pamphlet’s contents were equally uplifting. Or were the pastel tones intended to take the edge off the life sentence contained within? Is that what Hope had to do now—paint her life in pastels?

She had always hated pastels. It was the primary color spectrum of a tropical jungle or the honesty of Delft blue china she always preferred. She laid the pamphlet down and picked up her toast.

Stay with the program, Hope. Stay with the program. Remember, this is a day of promise.

A ray of light filtered through the Japanese maple usually shading her patio. It lit up Hope’s face and she lifted it to let the sunshine warm her. A breeze picked up the pamphlet in pastel colors, and it fell to the flagstone terrace.

Alerted by the sound, Hope watched as the pages fluttered. Then the pamphlet closed on itself. Living with MS, the teal-colored title said.

Saving 1399 pennies was not going to make a hiking vacation in the Costa Rican mountains possible, was it?

Hope swept up her plate, most of the toast still uneaten, and headed for the kitchen door. There, head bowed, she stopped momentarily before turning to look at the patio again. The sun is still strong, she thought as she lifted her face to warm it. The plate in her hand dropped to the flagstone and shattered.


This concludes the 44th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on September 24, 2009. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, September 22, 2009.

Thank you.

Comments for this post.

Carnival of MS Bloggers #12

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

"I have embraced my joy and rejected my fear so, while I am truly present, I accept whatever the future may hold. " - Nadja Tizer

Strength in the face of the unknown - that's something to which I aspire daily. With or without multiple sclerosis, each of us do not know exactly what tomorrow or next year may bring. That is a common truth of living. But sometimes what is perceived as strength may stem from compassion, other times it may be a method of self-affirmation.

"I maintain a positive attitude because I want that reflected back on me."
- Shauna in Keep Smiling.

On the side of this blog is a quote I was kindly allowed to put up by the author:

Anyone who has ever gone through a serious illness has probably been told that they are “so strong,” when in fact, that strength has been mistaken for a patient’s need to not inflict any more emotional pain on those surrounding them.

The reason this particular quote resonated with me is because on the day of my diagnosis and admission to hospital for treatment my main worry (actually, my only worry) was "how are my parents going to deal with this". My mom, I suspect like most moms, is something of a worry-wart. It was bad enough going off to college at 17 in Nova Scotia when my parents were living in South Korea. I knew they were worrying about me. I came down with mono during the second semester but didn't tell them until I was in recovery mode, because if they knew how sick I had been, they'd have been on the first plane, train, or automobile that would get them to me. Two days of travel to watch me throw up? I don't think so.

I honestly wasn't concerned about what MS was going to do to me. I already had known a couple of people with MS and they seemed to be OK. One gal had terrible tremors but she led a very normal life, married with kids. The other guy was somewhat disabled and had a scooter and had taken early retirement but he seemed to be coping well enough. And I literally figured that if I lost the use of the right side of my body permanently, then so be it, I'll get really good at typing with my left hand and start wearing velcro sneakers.

I was concerned about my parents. Firstly, I thought, Mom will blame herself. You know, "I should have eaten better when I was pregnant with you", "We should have insisted they remove your tonsils at 4 instead of waiting til you were 10, then you wouldn't have had all those infections growing up", "I shouldn't have let you eat that bug when you were 2". Then I thought, they're going to be calculating what my expenses are going to be as a disabled person and try to put together some sort of trust fund when they should spend their money on themselves in retirement. (They were just approaching retirement at the time). And then I thought they'll never sleep soundly again.

Mom and Dad were a little freaked out, as any parent would be. But after I called them, they showed up in the hospital to see me an hour later, and seemed put together. Of course, I was joking with the staff and eavesdropping on other patients' conversations in the ER and wondering how long I'd be in the hospital. The Parental Units put on a very brave face. When the admitting nurse came to fill out some forms she asked me how long I'd had MS. I looked at my watch and said, "About an hour and a half". She laughed, my folks didn't. "You were just diagnosed then", she said, and added, "I've had it for 5 years". I just looked at Mom and smiled. [...]


I spoke with a neighbour recently, a very nice, semi-retired widower. He told me about his wife's battle with cancer and how she carried on as normal as long as possible. She maintained a strength and positive attitude until the very end that he marvelled at. "She had cancer! She was dying! She was suffering! It was hard on me, but it was much worse for her", he told me. "How could she have been smiling when things were going to end for her?" I told him that it may not have been as hard on her physically as he thought. "What's harder perhaps is worrying about how your loved ones will react to the news or the event of a death. She was probably concerned that you'd have a hard time dealing with her passing, so to help ease your mind, she put on a happy face". And I told him that I maintain a positive attitude because I want that reflected back on me.

If I lead by example, others will follow. I hope.

Curb Your Reaction and the Face of MS

Newly-diagnosed just a mere three weeks ago, Nina shares her concern over the Reactions she has received when revealing her diagnosis.

I clearly have no problem with people knowing I have MS. I mean, I can put a face on MS that might be different than what you might expect so it’s surprising to everyone I tell. The reactions of others have been interesting to say the least. The reaction to it is really the only reason I considered keeping this private. If I hear another story about how (insert family member) that died of MS, I might explode. The life expectancy for someone with MS is 95% of the time the same as someone without MS.

I think everyone knows one person that has MS and they can’t do normal daily activities. The problem is that there is another three with MS out there doing normal everyday things with no visible disabilities. Those folks are the “normal” face of MS. They aren’t as open because well, they are out living their lives and don’t have time to deal with other peoples emotional baggage. There is no reason to tell me I will be fine or that it’s going to be ok if I am crying. Don’t argue with me that people live normal lives with MS. Don’t invalidation my sadness. I am allowed to be sad. Not only am I allowed but its normally, accepted and ok. Perfectly ok.

With that said, I am a logical soul and realize that I will be fine. I have a wonderful support system and I am still the normal girl that I was before. So your question might be, how SHOULD one reaction to this kind of news from a friend or loved one? Well, I have a few suggestions:

• Keep your personal NEGATIVE experiences about MS to yourself. It’s not helpful, really.
• Research what MS is. I had a coworker later tell me they were reading about MS and I was so comforted by this for some reason. Sort of like he understood what I am or will be going through.
• Allow them to have emotions and sadness. Keep your comments about how it’ll be ok or it’s not that bad to yourself. You are just uncomfortable with sadness and really, sadness is ok.
• And finally, one of the best things that has happened to me is the ability to connect positive people living their lives with MS.

"If not me, then who?"

Exactly!! Thank you Nadja for asking this very important question. Nadja was diagnosed less than three months ago and is already providing an excellent example of how one can concentrate on Living! with MS.

I want people to know that MS has really changed me and at times I want to talk about that transformation.

Some people might ask why I would want to be the poster child for MS, why I would put my life out on display so honestly and openly... I would respond, "If not me, then who?" Someone has to speak. We spend life seeking connections and understanding, how can we understand the range of human experience if no one ever speaks? How can we learn to love and respect our fellow man if we can't even be honest about the deepest, darkest recesses of our being? I remember that my mother told me that I don't have to change the world just because I have MS. I counter again, "If not me then who?" We can't sit on our butts and wait for someone to come along and save the world. We have to take responsibility and do it ourselves.

My mentor also cautioned me about putting my life out on display. To that I said, "I don't give a F--- what anyone thinks." She was very taken aback. I didn't mean it in a harsh way. I just meant that MS has taught me to scoff at fear. I used to worry so much about what other people thought. Now I think, "You can't please everyone, you've got to please yourself (I think that line comes from a Credence song)."

Truly the 'cat's pajamas', Nadja shares a simple thing we each can do to help make life better for those of us who face Social Security Disability Insurance.

Last night I attended an MS information session for those recently diagnosed with MS. The topic for the evening was financial planning and insurance. During the session I learned that many people with MS and other degenerative illnesses are forced to quit their job and then lose their health insurance as a result. If they do not immediately qualify for Medicare or Medicaid they are often forced to apply for Social Security Disability Insurance (SSDI).
According to the presentation, "To be entitled to Social Security benefits, a person must have worked 5 of the 10 years immediately before the disability and paid FICA taxes. The disability or impairment must be expected to last for at least 12 months." In addition, "A person becomes Medicare eligible 24 months from the date of the initial application for SSDI-once the SSDI award has been made."

Dear Mr. Legislator:
Here is my question Mr. Legislator: How can the government allow a sick or disabled person to wait up to 24 months for help? This seems unconscionable to me.

I am writing to ask that you provide more funding now for indigent care. I am also asking that you help change the laws that can make a person wait 24 months for the funding and care they need.

Additionally, I would also like to see more funding dedicated to helping poor,uninsured people with MS get their medications. I would specifically like to see funding to pay for interferons that slow the spread of the disease. I would like to see more funding for cortico steroids for those suffering a relapse or flare up of their MS.

Sir, thank you for considering my plea on behalf of those receiving indigent care and the MS sufferers who need insurance immediately.
Respectfully,
Nadja Tizer

*Blog Readers please send a letter like this one to your legislator today.

For information regarding current Legislative Issues identified by the National Multiple Sclerosis Society, please visit the Advocacy Toolkit and look here for tips on communicating with your Elected Officials including Representatives and Senators.

This concludes the 12th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on June 19, 2008. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, June 17, 2008.

Thank you.
Comments for this post.

Carnival of MS Bloggers #11 - Strength Edition

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Native American Proverb: “That which was stolen from my soul has been returned. I shall follow the birds great and small.”

Brian, a newly diagnosed MSer who blogs at The Life of BMW, shares the story of the carpal tunnel syndrome that wasn't and the multiple sclerosis that is. Interestingly it was the Pain Specialist, all lined up to give Brian a steroid injection in his lower back to calm the effects of a bulging disk, who put two and two together and encouraged Brian to see a neurologist.

Me & a dumb stupid whore named MS~ (excerpt)

At the beginning of 2008 I scheduled the MRI. I decided to wait until after the holidays because I didn't want to ruin the season for me and my family. I went in for my MRI and it was frightening, but not all that bad. The very next day I called my doctor to get the results. His first words were, "It doesn't look good!" Shit something is wrong and all I can think is, “I'm going to die”. My doctor started reading the MRI report and I shouted, "Doctor, just tell me what is wrong with me!" He stated that it appears that I have MS and would need to see a neurologist. The next few moments are a blur, but I kind of lost it. I was hysterical and needed to get home. I was at work, so I had Chaz come and pick me up. I couldn't believe that this was happening. How did I get MS? My life will forever be different because now I have a disability. WHAT THE FUCK!!!

After the initial shock had worn off I decided to embrace my MS and fight it. I scheduled my appointment with one of the best MS neurologists and he officially diagnosed me with Multiple Sclerosis. Now the next step is starting the treatments. The treatments are a combination of home injections as well as steroid infusions at the MS Center. The great thing is that we found it so early and I have a good chance of controlling my episodes. The main thing about MS is that you must be positive. Multiple Sclerosis sucks, but it could be a lot worse. It's not life threatening and it's something I can manage with different treatments. When I first researched MS I noticed that I only had one of the symptoms. I was glad that I didn't have some of the other symptoms. Well, again I spoke to soon. This past Monday I woke up and I had a terrible strain in my right eye. I "assumed" that I had a nasty sinus infection. I contacted my doctor to get an antibiotic. The strain formed into blurry vision and slight blindness. This is definitely not a sinus issue!

What I have is a symptom of MS called Optic Neuritis. Optic Neuritis causes temporary blindness, blurry vision and possible pain in one eye. This will last, without treatment, anywhere between 4 to 12 weeks. It has been a week and luckily I am starting treatment on this upcoming Monday. The reason I wanted to share all of this personal information is because it helps me release some of the frustration that comes along with my MS. As I stated, when I first found out about MS I was horrified. Now, I feel so relived and lucky that it's not something worse. I consider this to be a wake up call for my health. After 13 years of smoking ciggs I quit cold turkey, 8 weeks ago. Anyone that knows me understands that this is huge for me because I love my ciggs. I feel everything happens for a reason. The bulging disc has nothing to do with my MS, but if it wasn't for the bulging disc I would not have known I had MS. I feel absolutely blessed, as corny as that sounds, because I can deal with this disease. I am fortunate enough to have an excellent family and friends that will always support me. MS is fucking scary, but it’s something I have to deal with and I am ready to knock this bitch out! HOLLA~

Shauna, a very cool 'geeky' radio jock who blogs at bugs, bikes, brains, shares a story of traumas, scars, disability, failure, and rejection. Even as a young child, Shauna could appreciate the enormous strength which comes from facing life's challenges. I hope you too can derive strength from adversity.

Strength

As a child I was horse crazy. I still kind of am, though not enough that I have horses on my walls, pillows, etc. Horses are huge, gentle, creatures, with unmatched beauty and grace. And speed. I'm not sure what always attracted me to horses, but like many young girls, I was horse crazy. I read every series of horse books out there including the Black Stallion and Fury series. I knew about colic in horses, and how it can kill them. I knew about fetlocks and feathers, gaits and geldings, withers and warmbloods. My CCM supercycle was turquoise and one speed and I named it Mustang.

I learned to ride when I was 13 on a gorgeous buckskin gelding named Nugget. I had no idea what I was doing but I learned quickly and within a couple of days was able to ride bareback. I stuck to that horse like a burr, though I hope not as annoying. He was the eldest horse at the stable and apparently the gentlest. The only fly in the ointment was his experience as a youngster with a barb-wire fence and his face. He still bore the scars of his entanglement and that endeared him to me even more. He did take off in fright on the first day. When on a trail ride we had to walk across a barb wire fence laid down in the field in preparation for installment. As soon as he saw it, he sped off with tiny little me on his back pulling on the reins as hard as I could. I was small for my age and it took everything I had to stop him. That's when they explained to me about his bad experience. Nugget had several black lines on his tan face. They were the scars from the fence and as far as I was concerned, they were streaks of beauty. They gave him a story.

One horse story I read as a kid was The Blind Colt by Glen Rounds. It's a wonderful story about the birth and first year of life of a blind colt and the boy who catches and trains it. (As an adult I went looking for the book and it took a while to track down and order.)

I also had an affinity for Beethoven as a kid. I took piano lessons for several years and my favourite composer by far was Ludwig. The fact that the man composed some of the greatest music the world has ever heard while he was deaf, impressed me to no end. I had a poster of Einstein on my wall when I was 10. What I liked about him was that he had failed a grade or two in school but still went on to become...well, you know what happened to him.

As a teenager, I was a real geeky kid. I enjoyed school and reading and in grades 8 and 9 was bullied for this. I was once mistaken for a boy at the age of 14 (I was a late bloomer) and I didn't fit in with most of the kids in school so I spent a lot of time by myself. I was different and felt it. Nugget, The Blind Colt, Beethoven and Einstein all became role models for me as I navigated the typical angst ridden teenage years. I knew that whatever hell I was going through at the time would eventually come to an end, though that was little solace then. I couldn't wait to be an adult where I'd be in the company of other adults who wouldn't treat me like an outcast. Naive, eh?

I'm not sure why I had an affinity as a kid for the underdog or those with a traumatic life experience. Being small, perhaps I saw strength in those facing "disabilities" or challenges and admired that. Perhaps the Gods were foreshadowing my own challenges.

S.

Coping with MS - I Follow the Birds 

by Diane J. Standiford

One of the most difficult things about living with multiple sclerosis is that it can steal parts of your personality. Some traits are missed by no one; some defined your very soul, such was my theft.

I loved helping those in need. As a child I formed “The Good Guys” club, consisting of my two younger cousins and me. We met in my dirty, cobweb and bat infested basement to plan what good deeds we could do that day. During snow filled Indiana winters, I loved to clean off the cars on our street. . After my great aunt lost some of her vision, my beat up Ford station wagon, was always available to take her to get her hair styled or keep doctor appointments. Surrounded by three rivers, my hometown often flooded and sandbagging in the pitch dark at the rivers edge to try and save a senior’s house filled me with great pleasure. After I moved to Seattle and MS took hold of me, my days of helping others turned into nights of questioning who I was.

One of the reasons I moved to Seattle was to see the seagulls depicting the Seattle scenery in a brochures I had requested upon turning 18 and knowing home was not in Indiana. Something about seagulls called to me. Soon after arriving I headed toward the scent of Puget Sound waters and the sound of seagulls. My first sighting was in front of the Seattle Public Library. Hearing the unique cry of the gull I looked up and there one was, in all the grandeur I imagined, and I could have sworn it was watching me too.

When I would move, it moved with me as if it were following me, welcoming me to my dream, performing just for my…plop! Suddenly my glasses were covered with a white substance I would come to know as seagull poop. Then it unceremoniously glided away.

It seems when diagnosed with a life altering disease that we humans are left with three choices: Stand still, move sideways, move forward. If we stand still, frozen by shock and disbelief, eventually we become as rigid as a tombstone--nothing but a stone where once there was a life.

If we move sideways then we immerse ourselves in our physical condition. We obsess on our losses and our what-could-have-been, or what-may-be. We spend our time searching for a cure, a reason, a logical outcome. Everyone around us seems to be moving to and fro. We become spectators at a tennis match that never ends.

The only option that made sense to me was to move forward into the unknown. Accepting that I would become a new me, embracing whoever that would be was an exciting idea. I chose to focus my moments on what I still could do. Luckily, I had help from above.

Looking out of the office building where I worked as a customer service representative for Seattle City Light, my co-workers and I noticed a seagull preparing a nest on the ledge of the building across the street. This provided several of us with a daily distraction from our stressful time on the phones handling angry customer’s complaints.

We were disturbed to see that a baby gull had somehow dropped to the ledge a story away from the nest. The mother (We presumed mother, though often there were two seagulls that hung around, daddy was very “wings on,”) was not happy.
She seemed unable to reach the baby as it had fallen to a very precarious, thin ledge six stories up. Now we had real drama. After several days it seemed mother and father gave up on the little one. We watched it shiver in the cold early morning Seattle rain. Swirling winds almost flung it to the street below. Many of my co-workers laughed at me for worrying so. It was a bird after all, it will not fall, it will fly. That made sense, but after a week of watching it all alone and not being fed…one day I looked over and it laid down, apparently too weak to stand.

How could I watch and do nothing?
“Can I borrow your sweater for a few moments?” I asked my co-worker who sat next to me, as I reached for it.
“Uh, ok.”
“Silvia, let’s go get that bird down,” I said as I swiftly walked past her desk in front of mine.

Silvia was a short, stocky, almost sixty, Greek woman; who I greatly respected and felt her to be a woman of action. She quickly removed her headset and off we went.

Sometimes, no, often, I wonder what motivates me. A flat land Indiana small town girl who hated the ride up to the Space Needle, hated Ferris wheels, hated ladders, loved my feet planted firmly on floor one, plus I happened to have multiple sclerosis; and I’ve decided that my friend and I will scale a big city sky scraper to save a baby bird? But this is all in hindsight, at the time Silvia and I never hesitated.

By elevator we made it to the height where the bird was, and I asked Silvia to wait close to the exit. “Silvia, I’ll grab the bird in the sweater, hand it off to you and you take it up...” “OK,” she replied in her heavy Greek accent. That was the only discussion we had about it. What could be simpler?

Oh sure, I had bouts of Vertigo, yeah dizziness on occasion, loss of balance, just the usual MS symptoms. As people in nearby buildings watched the two kooks up by the baby seagull, I got as close to the ledge as I could. The baby was within my arms length. It was considerably larger up close, robin size with a very sharp beak. As it saw my head poke around the corner it immediately backed away. “Diane! Be careful,” Silvia cried out as I turned and put my finger to my lips signing “sshh.”

With as much sweetness as I could muster I began, “Hi, little gull. It’s okay, don’t be scared. Come here.” The bird was scared to death and trembling uncontrollably. With the sweater hidden behind my back, bending further over the ledge, the gull started scooting slowly towards me. Just then a woman’s soft voice asked in a whisper, “What can I do to help?”

Tina, a friend of Silvia’s, had heard of our rescue attempt and ran over to assist. The baby bird was startled, as was I, and again it retreated.

“Tina, find this building’s maintenance man and tell him to bring a ladder. I’ll get the bird, hand it off to Silvia then she can give it to the man to take it up to the nest.” “Got it,” she said as she quickly turned and ran off, telling Silvia the new plan. Turning my attention back to the bird it had retreated further away now than when we first arrived. It looked exhausted as it slumped onto its side.

Think, Diane, think, I was saying under my breath, but it was hard to think because there was a strange, distant high pitched whistling sound in my ears. It grew loud enough to drown out the sound of the traffic below. As I glanced at Silvia for just a moment the look on her face was one of terror. Turning my head as if in slow motion I looked down Third Avenue, a main street in Seattle, and flying swiftly our way right down the middle of the street was a seagull. It was headed for me and the closer it came the larger it grew. It stopped two inches from my face, hovering there, its long beak as sharp as any sword I cold imagine and it stared at me.

Maybe this is a good time to tell you what happened at a small duck pond in front of an apartment complex I once lived at. The ducks had become aggressive to residents who fed them bread crumbs. After my bag of bread crumbs was eaten I would hold up my hands to the ducks and they simple turned away.

So when the parent seagull stared me down I pointed to the baby, and then made the motion of lifting it up to the nest. The huge, beautiful bird watched my movements then flew over to the baby and screeched until the baby stood and started moving towards me. The adult bird flew away straight down the street again and out of sight. Trembling more each step it took, I repeated my soft words of encouragement, cupping my hand, not reaching over too far so it might feel it had far to go before I could…swiftly with one motion I threw the sweater over the little gull and scooped him up, gently I handed it to Silvia who ran it to Tina who handed it to the maintenance man who had his ladder in place against the roof tier and up he went. Moments later he returned, the bird was back in the nest and within seconds the parent bird appeared out of no where and landed at the nest. Silvia summed it all up with, “There.” We headed back to work.

Returning to some applause, I collapsed, exhausted, into my desk chair as my co-worker who sat next to me said nonchalantly,” Where is my sweater?”

Thus began a series of bird rescues. Walking past an empty apartment in my building the shrieks of the apt. manager could be heard. She was chasing a sparrow around the room like a crazy woman. I calmly walked in, took off my jacket, and I began speaking softly to the frightened bird. It landed at my feet and I quickly covered it with my jacket; then scooped it up and released it out the window. The apt. mgr. was thrilled. “How did you learn to do that?” she asked. I shrugged my shoulders.

At these times a memory does come back to me when a bat was loose in the house my mother and I lived in. We were both frantic. A visiting friend of my brother’s asked if we had a shoe box. The bat was clinging to a curtain. He took the shoe box and using the lid flipped the bat inside.

Not long after the gull and sparrow experiences, I was sitting on a bench near Lake Washington watching a duck having a fit. Passersby were trying to chase it away. It was quacking so loudly without out taking a breath, of course it came up to me. Showing it my empty hands, no food here, ducky, it just got louder. OK, I stood and it waddled away. I followed down a steep embankment, relying greatly on my cane, along the lake’s edge, “I can’t swim you know!” (Now I was shouting logic to a duck)

Suddenly the wise-quacker stopped and looked at me with a, “Well, get to it!” look on its face. “Peep, peep, peep…” I heard, but where was it coming from? The duck was getting an attitude with me now and began circling a spot ahead. Sure enough there in a hole in the ground was a baby duckling, muddy and pitiful looking, but not so far down I couldn’t simply bend over and pick him up. Off they waddled without so much as a thank you.

Over the years birds in trouble have somehow found their way into my life. Even now that I spend most of my time in a power chair, birds serenade me and fly into my balcony. Just last week I escorted a wayward sparrow back outside from my apartment buildings hallway. I am me again.

Native American Proverb:
“That which was stolen from my soul has been returned. I shall follow the birds great and small.”

Retired in 2004 after 18 years of working for the City of Seattle, recently turning 51 and living with MS for over 20 years, I continues to seek new ways of embracing who I have become by focusing on all that I can do while moving forward past what I can not do.

And finally, Oui ?... SEPourkoi ? , the blog of a French MS patient, Missbizz, provides a forum, lively discussion, and helpful links to patient-oriented organizations. Pat shares this post with us - SCLÉROSE EN PLAQUES : LES BIENFAITS DE L'ORTHOPHONIE - and describes her blog in the following manner...

In early 2003, it took up residence in my central nervous system and has clearly found the place comfortable… Small considerations and other thoughts about this undesirable invader: multiple sclerosis (the blog of a French MS patient... in French language)

This concludes the 11th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on June 4, 2008. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, June 2, 2008.

Thank you.
Comments for this post.

Carnival of MS Bloggers #6 - A Country of Our Own

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Diane of A Stellarlife bravely welcomes us to

"A Country Called Multiple Sclerosis"

One day in 1990 I suddenly moved to another country. Not knowing the spoken language, not familiar with the foods of choice, and knowing no one else who had ever been to this place; well, I was on my own. The country was called Multiple Sclerosis.

Knowing I was headed there or the island of a brain tumor, I was quite happy to have an MRI expose me to my new path. Winding through symptoms including numbness, foot drop, legal blindness, slurred speech, fingers to feet that stopped functioning, I settled, after 18 years into my current life with twists and turns more dramatic than any roller coaster, comfortably aboard a lift-chair with a 5 MPH power chair poised next to it. I was a long way from Indiana.

First I had to learn the language. MRI, ABC and sometimes RTN, NIH, CNS, RR, PT, OT, AFO, oh dear, hard to learn a new language as an adult, especially when the natives often speak in acronyms.

The cuisine took some getting used to as well: green tea, low fat, lots of fruits and vegetables, high fiber, water galore. Out were my trips to burger land, fried chicken and frozen TV dinners. Oh, and for dessert: stretching with yoga and a thick topping of meditation.

The political system is not that unusual. Doctors, Researchers, Therapists, Pharmacists, all adding their individual ideas for a better MS. We do not vote, but we visit them and choose which ones will represent our needs the best. Sometimes they exceed our expectations; sometimes they drift off point, leaving us adrift as well. Fundraising is ongoing and there never is enough money to deliver what we all want---a cure.

We need not feel alone though, for there are societies, associations, and many groups that offer power in numbers. Thank goodness the Internet thrives in this country and offers engines to take us to many helpful sites. And since any minuscule point on any tiny nerve from the top of our heads to the tips of our toes can be compromised at each moment in time, well, no two bodies ever experience exactly the same physical mishaps; nor, for the same length of time. No wonder the first pilgrims to this country were considered insane.

I guess the most difficult obstacle I had to learn to deal with was the uncertainly of life here. Oh, sure, in Indiana we had 10’ below and snow that stayed for months. Spring would bring tornadoes and the summer brought humidity with 90’ temps that were unbearable. “Just wait and the weather will change,” they used to say; actually that was said in my second home-Seattle, Washington as well. And the same attitude is true with MS. Unpredictable: the concept that defines MS and dismantles the goal-oriented planner like me.

Do not bother looking for a visitor’s bureau; none exists, probably due to having to update brochures so often. (The cause is this; no it’s not. Don’t eat dairy; dairy is fine. It is not inherited; yes it is. This drug is best; no this one is better.) Besides, who would want to visit here? Better to lose your money in Vegas than lose your mind here. Our brains are shrinking, atrophy of limbs sneaks up on us. No beaches for sunbathing or saunas for visitors, the heat will slow our nerve signals to a virtual stop.

Will I fall today or trip over my unresponsive foot? How much will be seen clearly today and will I have the strength to look around? Numbness, tingling, pain and spasticity are always nearby. Weakness, depression, constant worries about the “f” word lurk around every boarded up tourist attraction.

F for future, the fear one dare not say aloud. Jobs are so difficult to keep here. Money is always a concern and no insurance will cover our “pre-existing condition.”

So I decided to embrace my new country, “go with the flow,” “chill out,” “take it one day at a time.” After all, this is my home now. Each day is a new adventure, a new word to learn, a new fellow citizen to meet, a new mountain to climb. Yes, MS is my new home. I embrace the new person I have become and I wouldn’t live anywhere else. Headed this way? Be brave, it is a great adventure.

Next up, meet some of the fabulous residents of MS Country.

Jenn shares some good news, "in the 10 months since my last MRI, there are NO new lesions!!!"

We need to find out what causes this thing, and though we have figured out how to slow the progression, our medical best is still a failure. The disease will still progress. We've come a long way baby, and I am grateful, but we have some exciting challenges still ahead. MS does not discriminate. You can be a young healthy fine woman one day as I was, and the next day my vision was severely decreased thanks to Optic Neuritis, and my world was shaken. I am glad to say that I do not identify myself with MS, IT is not ME. I don't hate it or put any negative energy (that is draining!) toward it. I am just loving my body, and the gift of life, and the nature around me that God has blessed us and revealed Himself to us through. I would LOVE to think that I may be healed, yet I realize for most that does not happen.

The many gifts of life don't always come with just one blessing or one challenge at a time. Often it's a mixed bag. Vicki takes time to relay the major life events of her past year - through a new relationship, strange symptoms, THE diagnosis, relapses, love, an engagement, and a literal moving of house and home.

"A year that has been so hard yet also so wonderfully good!"

It all started in January 2007, the 6th to be precise, when I met B for the first time in person for lunch in a pub. I talked the whole time and I think he only spoke to ask me what I wanted to drink!

So things went from there, we met for dinner and then again for lunch and we carried on. At the end of January I got a strange feeling in my right hand, my little finger and finger next to it were feeling slightly numb. I put this down to having driven a strange vehicle the weekend before. After that the numbness moved to my feet and lower legs and gradually moved on up. To begin with it wasn’t bad. I could feel almost normally, then one morning after a hard couple of shifts I woke up with much less feeling all the way from my feet to my bum and poor balance.

I thought back to two periods of numbness to the left side of my torso which included an episode of a very strange sensation down my spine. I had decided that week that I was not safe doing my job as an ambulance technician and therefore made a Drs appointment. I was thinking referral to an osteopath/ chiropractor for my back but no referral to a neurologist.

Throughout all of this B was there for me. I gave him the opportunity to get out of the relationship on the day I was diagnosed but he said no. He had told me he loved me the month or so before; I had said it back some time after. Having never said I love you to a boyfriend before it was a bit of a scary and unknown quantity! His view was that you never know what is ahead and lets just get on with things!

B and I got engaged on the 5th January 2008 and we are in the process of moving house. He doesn’t seem at all phased by any of what has happened over the last year or so and says he loves me more and more.

So as I said at the beginning of this post, it’s been a horrible year it really has but I wouldn’t go back. I’ll take B and the MS rather than not having either. May sound strange but that’s how I feel!

And do take the time to read the comments which have been left for Vicki. You will find that love often eclipses the uncertainties of life with multiple sclerosis in this new country of ours.

"Anyone who has never made a mistake has never tried anything new." - Albert Einstein

Right on. This is what I've been trying to get across to my son Adrian. He's 9 and learning to read, write, spell and process life with dyslexia. He wants so badly to be perfect, but he can't. So I've been talking to him about how it's ok to not get things right all the time. And it's ok to feel bad about it. The crappy feelings will go away. Keep practicing. As my friend Paul's wife Laura says "Practice makes pretty good!"

Read Trrish's inspiring post at These Pretzels are Making Me Thirsty.

Sharing some great MS moments, newly-diagnosed Kim of Sunshine and Moonlight is reminded that having M.S. can have its benefits. In It's a Good Thing I Have M.S.!, she writes of her comical weekend snow-bound in Northwestern Pennsylvania.

Having avoided the bathtub at all costs since her diagnosis, Kim tells of making nice with her tub in My Bathtub Didn't Eat Me! and introduces what might be the new national anthem for M.S. patients.

And in the true spirit of comedian Bill Engvall, the land of Sunshine and Moonlight explores Here's Your Sign moments for M.S. patients.

Spying the victim of the dreaded Multiple Sclerosis Back Scars on Days of our Lives, the Queen of Mediocretia* of Suburbia says She Looks Great!

Back in '94, five days after my elective insurance started (victorious smug snort of self-satisfaction) I woke up and my feet were asleep. Oh, and I felt like my guts were super-glued together.

"Like a tight band is around your torso?" asked the neurologist I saw seven days after the insurance started.

"Why, yes, it feels just like that!" (Torso band. Classic. Textbook. So unimaginative.)

This all happened in less than a week. I went on a cruise, returned to an MRI and I was back on the medical Fast Track. The secret to the fast track? Have something so obvious even the receptionist can diagnose it.

"Hmm," grunted the neurologist, "I think you might have a mild case of MS."

"Hunh." I grunted in return, as these thoughts went through my head, in this order.

Curious to know what The Queen thought? What exactly are multiple sclerosis back scars? Who has them? And should you ask your neurologist about them?

For these and others answers to the mysteries of our new land, turn to In Which We Mock Our Illness, brought to you by Ellen, The Queen herself.

And finally, a mystery of a different nature...
"Nervonic Acid...Where Did It Go?"

I love a mystery. Don't you?
It brings out my inner Nancy Drew. I feel way more skilled than her though with my statistical knowledge (I teach statistics). So I'm more like a well designed character in a classic Agatha Christie novel....a curious statistician if you like ;)
So, the mystery that unfolded to me in the last year was one that erupted when I discovered the possible death of nervonic acid from a) our food chain and b) our food information chain.

Rather than revealing clues to the mystery as presented by Orla of Great Mastications, I recommend you read her inquiries into the significance of nervonic acid, a monounsaturated omega-9 fatty acid with a molecular structure of C24H46O2 which contains a C=C double bond in the w-9 position.

This concludes the brief tour of our new land, "A Country Called Multiple Sclerosis." Tune in next time...

But WAIT...that's not ALL!!!

We've also got some of our very own grass-roots media forces.

Stuart Schlossman of "Stu’s Views and MS Related News" msviewsandrelatednews publishes an e-Newsletter which is estimated to reach approximately 4000 people per week.

"With time on my hands, I wanted to provide Multiple Sclerosis information to and for, anybody seeking to be empowered with MS information. Remember please that Knowledge is Power and I want all whose lives are touched by MS, to have this Empowerment."

And Charles A. Rovira who is the one and only podcaster - that's like internet radio on demand for those who are unfamiliar - to focus on multiple sclerosis, MSers and creating a positive community of togetherness.

"I have a few hundred shows under my belt. You can pick up the last 100 shows on iTunes and play it on an iPod or other MP3 player. They are also available at MSB Podshow or there is even a player on the page itself at MSBPodcast.com."

Please do go check these guys out.

The next Carnival of MS Bloggers will be hosted here on March 27, 2008. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, March 25, 2008.

Thank you.
Comments for this post.