Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.
Courage, Hope, Joy, Musings
Courage And A Little Hope
At the MS gym that I am now a proud card carrying member of, which I never saw coming due to my negative preconceived notion about it, they are making a quilt to raffle off as a fund raiser for the gym. They want everyone who is so inclined to to take a square, make a design that represents them and how they feel about MS, how they deal/fight it, and write why they chose that design. I took a big square and a little square, not out of greed but because they want people to make both if that is their wont, and it is my wont. I puzzled over what I would do. I tossed around different ideas, like making a big friendly dog with a blank look, because that is how I feel when I go in there. I go in happy to see everyone and feel like I slobber all over them, which I probably do but they are too nice to tell me so. I finally came up with my idea and am now going to share it with you. No need to thank me; I'm generous like that.
I am going to make on the big square the Chinese sign for courage and on the little square the sign for hope. I have always said that for me having MS is more about courage than hope, and if I ever get another tattoo -- highly unlikely, the 2 I have are more than enough -- I would get the symbol for courage.
Hope is all well and good in a passive kind of way. I do have hope for the future and what may come of studies about MS, but I can't put all my diseased eggs into that basket. I do not foresee a cure for MS in my life time and can only hope for better drugs to help slow it down. I hope for medicines with better efficacy and with less side effects to come down the pipelines soon, but don't want to pin all my hopes on that lest I be disappointed when they do not come down that clogged pipeline.
Courage is active and I like active. For me, hope is sitting back and waiting, whereas courage is facing what is. Do I have the courage to face what this disease has done and most likely will do to me? Some days I do. Other days when I think about what the future may hold for me, I lose my courage and get scared. Then I start wrestling with the "what ifs," which I HATE and try to remember that I need to deal with what is right now and worry about the possible outcomes when they come. I want the courage to look this disease in the face without flinching. I want the courage to deal with what may come and to accept it with grace. The courage to deal with how the public may react to me -- mainly because I struggle with that some days and want the courage to go out even on my worst days instead of hiding at home. This is a scary disease and I think "courage" should replace "hope" as our catch word. It takes a lot of courage to face this disease and I need as much as I can get. I don't want to be the Cowardly Lion anymore.
by Laura of Shine the Divine
by Laura of Shine the Divine
You've probably heard people say go to your "happy place" before. Perhaps for you this "place" is by the sea, on top of a mountain, deep in a forest or by a crystal clear lake. Maybe it is in a cozy room warmed by a fire and you visualize yourself tucked in with a soft blanket. Your "happy place" might be different depending on the moment. Go to your "happy place" is an instruction to turn inward, toward a heart and mind space of calm, safety and joy...a place we visit for sanctuary when we are upset, when life feels overwhelming. This past week I found a new "happy place". This was a real happy place (as opposed to imagined) that buoyed my inner space to immediate joy and relaxation!
I spent an hour riding through the countryside and surrounding villages near my home. (I know, I know, "only drive for 20 minutes at a time"...but I took lots of pictures, so I reasoned that I was resting every time I stopped.) The truth is, I was getting tired. I was also noticing some anxiety arising as the fatigue was growing. Anxiety adds another layer to the tiredness, decreasing my ability to pay attention when driving. This combination has a potent impact on the functioning of my neurons. Just then, I noticed a sweet looking spot to stop, rest and refuel.
A bakery I had never noticed before. I parked my car, right next to the door, got out, took in a deep breath of spring-like air (we were having a few days of thaw) stepped inside the shop, leaning wearily on my cane. WoW! I felt like I had been transported to a realm of pure sensory delights. The aroma, the golden glow of fresh warm loaves, ahhh, these were not just any loaves. The sign in the parking lot said artisan bakery; these were well crafted works of art indeed. Elegant antler-like baguettes stacked, round loaves dressed with spirals of flour piled in baskets, a perfectly placed sprig (I think it was cilantro) and garlic, like a bud emerging from the center of one particularly striking doughy mound. Edible art. Did I mention the variety of grain combinations and all the seeds texturing the surfaces of the loaves yet? Or unusual dried fruits like figs, baked right in? I have never been the kind of woman to turn down fresh bread (even while others are scooping out the center of their bagels to save on carbs)...I LOVE BREAD! Just don't ask me to bake it myself...it is always, always a disaster. Ask my kids...no, never mind, don't ask my kids. They will surely tell you scary details about my lead-bread escapades of the past.
So, me being me, I asked if I could take some pictures of their comely loaves because they were so astonishingly beautiful. Go figure, the baker said, "Yes, of course." Hard to know from her smile if this was a regular request, but clearly it made her happy. I went out to the car, put down my glasses, picked up my camera, hobbled back in.
How to snap a photo while using a cane: Set the cane against a table. Position yourself to take stunning pictures of artistically arranged, painstakingly designed, deliciously baked bread. Voila.
Did I mention the scones with sharp Vermont cheddar & chives? I had to purchase some bread to be sure it was as mouth-wateringly delicious as it appeared to be. Again. WoW! These weren't just Good "looking" Loaves.
A cup of Jasmine tea in my left hand, camera in my back pocket; I balance tea, scone and loaf of fresh bread for dinner in hands while somehow opening the car door. Drive home. Rest until the kids return from school. Oh, no. One needs picking up. Get Belin. Drive her to PT. Park in handicapped space. Uh, oh, I forgot to bring my cane to PT. I'm tired, but I can manage, as it is not too far to the elevator and then the correct office. Drive home, debating in my mind...I would love some home-made vegetable soup to go with that bread with the roasted pumpkin seeds for dinner...I'm way too tired and it's too late to put up a pot of soup now. Drive a bit further than planned to purchase soup for the family from a favorite cafe to take home with us. It is now dark and I am really nervous about driving in the dark. My hands are numbing up...my right ankle painful. So much more for my now exhausted brain to process. But we make it home fine, and everyone is delighted by the gift of artisan bread, the best part of dinner.
Fast forward. I cannot find my cane anywhere. It's been 3 days. I've looked and looked. I figure, well, part of having MS (at least for me) is forgetfulness. I probably need to have several canes; this is going to happen sometimes. Some days I need the added assistance of a cane other days I don't, but I have to have one on hand always for the days I do. I say to Gord, "We better pick up a new cane today, maybe several...(I laugh at myself-I was always one to misplace things like keys for example...but a cane is a lot bigger and easier to spot than a set of keys...this is beyond my pre-MS forgetfulness). "Lets play hooky from life this morning" I suggest, "and go for a pretty drive before running errands"...and Gord says, "Show me where that bakery is while we are out."
We take a drive-I'm achy as it's -1F when we leave the house. My neurons are not appreciating the severe cold. I'm grateful to be a passenger, now that we are back to "normal" January temperatures. I snap some lovely photos (to post sometime in the future). We both feel relaxed and happy, joy riding on this cold, clear January morning. I actually remember where the bakery is located and we stop. He is as delighted as I was the first time I stepped inside. My heart sings on the second visit as well. We carefully select a hardy, crusty rye and two more of the cheddar & chive scones and tea (a light morning snack). I chat with the cashier in a friendly way. I don't know why, but for some reason, I look down and to the left edge of the counter. There it is, my cane, just hanging there next to the register! I say, "Hey, that's my cane, I've been looking everywhere for it!" The young woman looks at me more carefully, perhaps remembering my face or that I took photos (or maybe my unique accent). "Yeah, we thought it was some kind of miracle," she laughs, "person walks in with cane, tastes our bread and walks out healed."
I thought about this. In a way it was true. I walked out of there last week with a full, contented heart. I had been to my "Happy Place". I was distracted by JOY, and perhaps too many things in my hands to remember the cane. It was a healing of sorts. Temporary, as I really needed my cane that second morning, as fortune smiled and I found it again...but the lingering memory of the fragrance, warmth, colors and shapes of the breads in the bakery...this will be a healing place, a "happy place" to go to in my mind for a very long time.
Do you realize how many clubs in this country have no volunteer members? Club Med is not one. People go there to have wild sex, sun on the beach, have wild sex, enjoy fine dining, have mild sex, drink to excess, have WILD SEX, speed on wave runners, have a little sex, stay for seven days, return home, and have no sex. My wife and I belong to Club MS, a member of the Corporation of Chronic Diseases. Some of the other club members are: MD, MLS, Parkinson’s, diabetes, heart conditions, kidney conditions (also known as club dancing with dialysis), and club failure to thrive.
Corporate headquarters sends manuals to all new members and establishes the rules, regulations, fees, dues, laws, by-laws, fines, symptoms, all handicap aspects, misery associated with each, financial hardship, emotional stress, psychological breakdowns, marriage break ups, friendship ending, and relationship trauma. Hope you noticed there was no wild sex mentioned. Their sole purpose is to make all members totally miserable. Their motto is “We wouldn’t kill you, but we will make your life miserable.” The members of these clubs have many many problems dealing with their new club. All their freedom has been taken away. Independence is robbed quickly or slooowly. Their dependence on other people increases over time. They hate their disease. The members have no recourse but to deal with these issues.
“I just love the word issues. As a matter of fact I wrote a blog on issues.”
“Stop it! You are writing about a very important topic. You cannot go off on a tangent.”
“Okay! Okay! You are right.”
“Do you realize how many people in the world have these diseases? They are not laughing and take their disease very seriously. So get back on point and help these people out. The people don’t want to get more depressed reading about what they already know. Insight is what they want. So give them some of your vast experience regarding how to cope better.”
“No, it would take too long. I have an idea though. I could tell them a few stories about my wife, myself, and our third wheel (pain in the ass MS).”
“That’s better. Go for it. Make them laugh.”
“Okay, here we go.”
No more advice, about why, when, where, and how to cope with your disease. “I lied. LAUGH, LAUGH and LAUGH, some more is my advice. I hope you noticed I really screwed up on the last laugh. I love to see the red squiggly line under the words. It drives spell check crazy.”
Let’s see. My wife and I joined Club MS 20 years ago. Along with the membership card we received a 200 page manual, with the rules, regulations and an MS pamphlet titled “All the miseries you will be exposed to.” Someone from the kidney club told me their manual was 300 pages. “Boy we were lucky, I think?” We also got a new partner Ms. MS. She came absolutely free and shipping was included. Notice I have given her a title as she is still single. If MS was floating around in me it would be Mr. MS. Anyhow, she loves hanging around with me and the wife.
MS was kind enough to bring her girl friend Ms. Fatigue. They hang around together all the time. Fatigue is not our partner like MS. She is MS’s implementer, her main function is ruining our plans, and she has been highly successful. Not anymore. No! No! No! We called Ms. MS on her cell phone ten years ago and had a heart to heart with her. We told her we were going to do what we wanted when we wanted. Ms. MS who is always cool, calm and collected immediately consulted the manual and launched the following plagues on my wife.
The B&B plague (bladder and bowel)-75% success, FMS (fine motor skills ka-put)-97% success, D plague (dizziness permanent, now a dizzy broad)-99% success, CSAFMTAM (Can’t Stand Alone For More Than A Minute, this forced us to cut back on the dancing)-90% success, CNLC (Can No Longer Cook, I have that privilege now, lots of PB&J)-95% success, NLCDLMV ( No Longer Can Drive Large Moving Vehicles, had to give up her job as a crane operator, oops it was a bulldozer, no a steamroller, darn wrong again it was a massive destructive machine on wheels, forget it she can no longer drive)-100% success, V plague (Vision is poor. She can see no see-ums, but not airplanes. Go figure)-90% success. Ms. MS’s success rate was over 95% and in only 15 years was sitting on top of the world. The only kink in her armor was my wife’s walking. Reaching into her bag of plagues she sent out the W plague (WALKING).
Fifteen years we took all the plagues and never fought back. That would have been stupid on our part. We called Ms. MS on the cell again, got her voice mail, left a message, and are still waiting for her call. We needed help so we decided to go see The Great Houdini (Oops, he is dead). Instead we consulted The Shaman of Medical Healing (also known as Carlin the Chosen Neurologist). Over the years his advice and knowledge has been priceless. This time he was at a loss for words. He knew my wife was having problems walking and this concerned him. Then he revealed to us that Ms. MS had contacted him via cell and asked for his assistance. She was afraid my wife would get injured if she fell down, and was in desperate need of some type of medical device.
Ms. MS doesn’t really care about the people she has entered. When one of her plagues fails she will do anything to succeed. The Chosen had not seen my wife walk alone in a number of years and brought her out into the hall. Moving along the wall she walked to the end of the hall and back. Returning to his office he said,” I think it would be beneficial if you got some kind of medical device to help you walk.” He then offered my wife the following; cane, crutches, Canadian crutches, walker, rolling walker, wheelchair, electric wheelchair, scooter, electric scooter, go cart, hover round, wave runner, boat, speed boat, wagon, horse, carriage, and finally a pile of pillows attached to her body. Taking out his prescription pad he looked over at my wife and waited. Giving him the dagger eyes (when you get the dagger eyes usually your life flashes before you) my wife replied, “I have my walls.” Shaking his head he replied, “Guess this isn’t the time for an assistive device.”
That was five years ago. Ms. MS was infuriated and had to contact corporate. Corporate was not pleased and first sent Fatigues twin brother Mr. Exhaustion. He had a few successes but was defeated and left. My wife was still walking in our home. After eighteen years corporate was at a loss. This had never happened before and an immediate board meeting was convened. After three days of deliberation their only option was to call in MR. EXACERBATION. He had never failed and was feared by the MS members. The stories surrounding him are legendary. He came, set up shop, and after a few days of observation proceeded to throw the kitchen sink, stove, refrigerator, microwave, tub, living and dining room furniture, all electronics, and the clothes hamper at my wife, to no avail. My wife got up, brushed herself off, looked him in the eye and said, “NAH! NAH! NAH! NAH! NAH! NAH! NAH! NAH! HEY! HEY! HEY! GOOD-BYE.”
Ms. MS still slinks around and plans. Ms. Fatigue now has a strong hold and often goes to Club Med on vacation. I wonder if she has wild sex. Does Fatigue and sex belong in the same sentence? Oh, well. We still see The Chosen, my wife walks around the house with her walls and me her walking wall, club MS is threatening us with yearly membership fees (fat chance) and every time my wife walks it pisses off her partner Ms. MS. Oh well we will always belong to club MS, but it could be worse.
With kindest regards, Judowolf
This concludes the 55th edition of the Carnival.
The next Carnival of MS Bloggers will be hosted here on February 25, 2010. 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, February 23, 2010.Comments for this post.