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Born in the 1860's and married at 16, my great grandmother had a challenging rural life mothering a dozen children. Yet by all accounts, despite many hardships and heartbreaks, she laughed a great deal and lived contentedly into her 90's. What was her secret to happiness? She had a motto that she kept written down and neatly folded inside a mahogany desk drawer. How do I know about her writing down that motto? Teenage me found it many years after her death as I searched for a pen. The folded note lay long forgotten inside the drawer of a desk she had left to one of her daughters. Upon her daughter’s death, the desk was passed on to me. It was the only item inside an otherwise empty desk drawer. The note having become stuck years earlier inside the drawer's metal track may have stayed hidden had I not noticed it years later. Once found, I was determined to read it, so I tugged on it hard several times before I managed to pull it loose, tearing it a little. I unfolded it with great curiosity and found that my great grandmother had written: "Things always work out for the best for those who make the best of how things work out." That's all it said. But really, that's all it needed to say. Her signature appeared underneath. I’m no longer a teenager and have now lived enough decades to understand my great-grandmother 's wisdom. Her advice has stood me in very good stead, particularly with regard to my dysautonomia. Although my dysautonomia symptoms began eighteen years ago, it was only two years ago that they rather abruptly worsened and closed the door on my physical mobility. Suddenly, I found myself unable to stand for more than five minutes at a time, which remains true to this day. I also found myself with time limits regarding how long I could sit up. This change in my health forced me to lie supine for chunks of hours each day. Boredom quickly set in. I viewed all those hours of having to lie down as nothing more than unwanted, frustrating interruptions in my day. Then I remembered that motto: “Things always work out for the best for those who make the best of how things work out.” I set my mind to exploring how I could make the best of this immobility situation I now found myself in. I decided that one way to make the best of things might be to find something productive to do with my hands while I was lying down. One idea that came to me was to paint. I had dabbled with painting on and off since childhood. Painting while lying down seemed like a logical idea for fending off the boredom inherent in being forced to lay down so much. It seemed like it might be worth a try. If it didn’t work out, I would come up with another idea. So… my intention was to follow my great grandmother’s motto and try to make the best of how things had turned out. I was basically hoping that painting might serve as a solution to the problem of feeling frustrated, bored, and unproductive. However, it didn't take long for the painting activities to quickly assume a life of their own. They immediately transformed my hours of frustration and boredom into hours of delightful fun. I no longer feel frustrated or bored at all when the time comes for me to lie down. To my surprise, there have been other unforeseen, positive, ripple effects that have come from painting again. I’ve formed new friendships with some other local artists (who are very accepting of my physical limitations). I have been pleasantly surprised at being approached by a few people interested in buying my art. None of this would have happened if not for my attempts to follow that motto. I look back now and realize that before following my great grandmother's words, my energy was focused on the frustration of the situation instead of the betterment of it. I viewed having to lie down as an interruption of all-those-things-I-wanted-to-be-doing-instead, and that was that. Being constantly frustrated with the situation had put my mind in a negative place. In sharp contrast, I now view the daily lying down episodes as “Okay, now it’s time to shift gears and paint for a while.” The hours swiftly fly and I am having fun while waiting for my body to reboot and allow me to sit/stand up again. I have my great grandmother’s motto to thank for this. Remembering to “Make the best of how things turn out” is, for me, a very powerful perspective shifter. It has helped me tremendously in adapting to my new physical limitations. When it comes to adjusting to my dysautonomia symptoms, I now proactively challenge myself to seek out ways to respond to the question “How can I make the best of this?” This shift in perspective has definitely helped me to maintain a happier life despite my physical limitations and life-altering circumstances. I feel lucky and grateful to have found her words when I did. Likewise, I hope you are able to find my great grandmother’s motto helpful as you work through your own unique dysautonomia challenges. Those of us with dysautonomia are each a little bit different but are also so much the same. You are not alone. Editor's note: Missy's art can be seen on her website Return to newsletter
“It will happen slowly, but it will happen.” I remember my neurologist, Dr. X, standing in front of me, her stethoscope around her neck and her hands in her pockets. She was quiet, relaxed and exuded confidence. Her composure gave me faith that it truly would happen. The Brain Fog would loosen its grip and my short-term-memory would improve. My cardiologist referred me to Dr.X because I had a panic attack at a zoo after getting separated from my husband. I didn’t even think to call to reach for my phone. I sat down on the closest bench and willed myself not to cry. I guess sitting was enough of a rest to bring back some clarity because I remembered the phone in my pocket. But before I could even call, I looked up and there he was. He had come back for me. I was shaken to the core. This event became a part of my history and one of the factors in my dysautonomia diagnosis. A few weeks earlier, Dr. X had ordered several head scans and a round of memory testing. The results were mixed. Physically there was nothing wrong that they could see in the MRIs but the memory testing showed I had some problems with recall and acuity. I knew I could not figure out how to put a tray of colored blocks into patterns fast enough. Sigh. She said, “ Too early, it’s too early for that for you”. We talked about my life, what I had done, what I would like to continue doing and what was special to me. I needed to get my brain juices flowing again. I am not sure how she got me to think this was my idea but Dr.X is a master of beneficent persuasion. I told her I read every day, I love adult coloring and taking photos with my cellphone. I had set my fate; it was like that great line from Ghostbusters, “You have chosen the destroyer.” Well, I had chosen. She liked me reading every day but suggested it should be non-fiction and subjects that are new to me. She liked adult coloring but only if I drew my own line drawings to fill in. Photography is a great hobby, but I needed to take photos in unfamiliar places. She also threw in making things by hand. I liked the thought of all of this and I accepted it. I think that accepting was the most important part. She recommended (with twists), what I already loved to do. Since I will be doing this forever, it is important to love your therapy. I love gardening and horticulture and fully embraced university extension factsheets - short and sweet, info-laden pages about plants, animals, or foods related to our lives and environment. I average about a half-dozen a week. It’s amazing how fast you can tear through a few pages about the flowers, herbs, or pollinators you love. There are a zillion topics to choose from and all non-fiction. My other joy has been cooking new recipes from old cookbooks. Again, reading. My thrift-store cookbook addiction has finally paid off. Right now I’m learning how to cook for my freezer which equals a fast and healthy dinner instead of take-out when I want to crash instead of cooking. Last week I froze polenta wedges and bags of cooked chicken strips I made on the electric grill. The week before I did some sweet potato puree and bags of chopped onions. I’ve got bags of frozen rice and cooked noodles tucked away. I make at least a dozen servings of each recipe so it’s worth the “spoons” I use for prep time. We’ve cut down greatly on takeout so overall this is a big plus. We eat a lot healthier and we keep our take-out money in our wallet. Please tip the cook. Another big gain came from reading DINET’s Facebook feed. Not every article is about dysautonomia and I enjoy reading the personal perspectives. More than anything else, I’ve gotten an education in how dysautonomia affects our lives. I can now dialogue with my doctors and better explain to family or strangers what we experience. Taking photos is easy - getting someplace new is not. My cardiologist already prescribed a daily walk -either outside or at the mall. I limit driving - no joy rides - just to the doctor or the supermarket across the street. I don’t go far. I park on top of the mall’s highest lot and took panorama shots of the skyline in the distance. I go downstairs and inside and take sienna tints of shoppers rushing by my bench. I go into to the dressing room and do a personal photo shoot of myself in fashions I would never buy. Well, not all the pieces! I take different photos of different things in different places. Mission accomplished. Each day I walk my two dogs separately (four walks a day!). I used to keep the phone in my pocket, but now it stays in my hand. I take pictures of what thrills me that moment - bark, molds, flowers, critters, clouds in the sky shaped like ducks. I usually delete more than I save - but the ones I save are keepers. Neurotherapy can do more than give you clarity; it improves your life. You are better able to interact with people and the world again. I’ve heard knowledge is power, but in this case, knowledge equals confidence. I don’t know what I look like to strangers when I’m grasping for words. It bothers me deeply that people see me impaired. Do they think I’m drunk or witless? Am I allowed out by myself? But now, I no longer find myself searching so often for words in a conversation. I am not hesitant to speak because I can find many words in my head, not just the one I lost in thought. Being able to have a conversation go to its end is something so many take for granted. I did, too. Learning about my condition has given me a greater vocabulary. I have a larger arsenal of words and phrases to bring to mind when I am suddenly at a loss for a specific word. In the last few months, I feel like the fog is clearing. I can recall discussions much better—I’m no longer asking my Hubs what he wants for dinner six times in a row. I think the last few months have been some of my most productive since my symptoms showed up three years ago. I’ve made advances in clarity and cognition. I can articulate better and I have more energy for “spoons” saved. We eat better and the dogs love it when I pick up that camera. And Hubs is sure happy--who doesn’t love a dinner like grandma used to make?! Editor's note: AdultColoringBook_TrudiDavidoff.pdf Download and enjoy! Return to newsletter