"Comfortable"

Friday morning I awoke to find that the joint pain caused by my Lupus had increased substantially. Friday night is the night my husband and I go out dancing and to dinner each week. With a slight growl I set about my day off chores, this particular occasion was priming the main bath which I am again repainting. After that was done as I could get it, it was off to the vet with my little old Foxhound. She’s healthy, lean and far more muscled than a girl of her age should be. Vet was happy, I was happy, she was happy.

Arriving home I prepared for a night of dancing. Picked through to find just the right black dress, and then painted my toe nails a smashing shade of Autumnal Bronze, with a top coat of orangey glitter to give them a bit of sparkle. Painting my toes odd colors and designing them in odd ways is part of my “thing”. When I worked for the department there were Standard Operating Procedures about every part of my body, what I could wear, what I couldn’t and what I must wear and what I cannot. My toes however were mine to do with as I pleased. The tradition of new and interesting color and design variations on my toes began then.

My husband arrived home and in the usual flurry of Friday night I rushed him to get ready so we wouldn’t be late. As he got ready he asked if I was sure we were going, since he knew I was in pain. I hadn’t finished my painting in the bathroom, and that for me is beyond odd. That was enough of an indicator for him to know my joints were a bit more tender than my vague descriptive term of “somewhat”. I assured him we were going and finished getting ready myself.

When we arrived at the dance studio, our instructor met us with her usual smile. As we began to dance she said I looked somewhat stiff. I nodded, and vaguely explained my joints were a bit sore. My husband simply smiled, used to my understatement. As we waltzed around the room I pushed past the pain and enjoyed the moment for what it was. After we had finished the dance she inquired a bit further about the joint pain. I explained it wasn’t that big of a deal, simply that the Lupus flares causing joint pain. Not much I can do about it other than ignore it. My husband explained in greater detail what that means. Her eyes grew a bit wide and she asked if I was sure that I wanted to continue. I laughed and nodded. “I figure I have two options. I can sit at home, being miserable, and wishing that this wouldn’t keep me from doing what I enjoy, or I can simply not let it keep me from what I enjoy. It’s a choice.” I shrugged and added with a grin, “Besides pain itself never killed anyone, that Developé (kick at the end of a staggered pattern where I am literally perched like a see-saw on one high heel) just might!” She laughed and shook her head. This is the usual response I receive when people do not seem to understand why I do what I do. Sitting home won’t cure or solve this. Sitting on the couch will make me bored, miserable and that just might kill me. To do what I love, pain or no pain is far better I say. At the end of the night my knees were surely telling me we had enough fun for one night.

When I arrived at work today (the next morning), I had my usual plethora of Saturday dogs. All regular customers on a four week schedule, so tightly fit in there is exactly a three minute reprieve midday for a short break, then it’s back to business. My friend and woman I work with bathed the dogs for me. I had set this up on Wednesday knowing after a night of dancing I may or may not be in tip top form for a day of grooming a boat load of dogs and cats on a stopwatch. As she bathed she asked why I didn’t have her blow the dogs out and brush them. She has already done 25% of what there was to do in the first place. I laughed, with dogs that come in this regularly, if she dried and brushed them there would be nothing left for me to do aside from ear cleaning and nail trimming. “What exactly am I going to do then?” She shrugged and suggested trimming the feet. I laughed harder and shook my head, and told her she was done, the rest I could handle on my own. She asked why I didn’t have her finish the dogs, and I repeated the same mantra from the night before. I don’t work because I need to, I work because I enjoy it, it gives me something to do and I love the dogs, I enjoy making them feel good, and my Saturday dogs are the best of my customers, and the best dogs I groom. Each one is a favorite, each one is a dog I look forward to seeing and spending time with because they enjoy being groomed as much as I enjoy grooming them. She called me a weirdo, as if this was somehow a new revelation and laughed as she walked out behind the shop. I called out to her asking if this was somehow new, she responded it surely was not.

I’ve known her for nearly twenty years now; she was the one who taught me how to groom a dog. She knows that no matter what comes up when the shop opens in the morning, I will be there. On occasion she has thrown me out, sent me off to a doctor for whatever injury she feels needs attention, but realistically she’s no better than I am about that whole thing. We’ve both worked with broken fingers, hands, ribs, and other assorted injuries that would send most folks screaming for pain medicine and to a couch for a week of sleeping it off. A few Tylenol and we’re both ready for a new day of doing what we love, injuries be damned.

I came home and asked my husband why it was that people have that reaction. Why do people want you to sit and do nothing, concentrating on the fact you’re in pain, when you could be doing something you enjoy, and yes, it is painful, but it’s not like sitting on a couch like a lump will make it hurt less. I am all for giving an injury that will heal with proper rest the time and support it needs to do so, but if neither will help, why just ride it out glumly from the sidelines? Why put life on hold while something else controls your life for you? Why give in to it? Why not take your life back from it, and live on, happy though perhaps a bit uncomfortable, but in control of your own destiny, doing what brings you joy? This concept surprises so many people and I do not know why. Would they prefer to sit there and give in to the pain, accept defeat and surrender to a disease that will eventually be my death? I accepted the fact that Lupus will likely be the thing that finally takes me, but not before I do everything I want to do, or as close as I can get to it. I’ve lost numerous family members to it, and in the end it’s the root cause of their demise. Some have given in to it, let it rob them of their lives and they allowed their lives to revolve around their disease. I refuse to do that. Lupus had best just get in gear and deal with the fact that it can bring whatever it wishes but I have no plans on letting that keep me from doing all the things I thrive on. Albeit I may need some Tylenol to make that happen, but what’s some acetaminophen between friends?

My husband replied simply that I was not normal. Well, this we both knew so not a shocker there, but he couldn’t explain to me why people simply give up, and give in. I don’t know that I’ll ever understand it. I can’t imagine not flying around the yard on my tractor, or playing in the dirt in my yard and gardens, dancing until my husband is too tired to dance another song, and running like a deer through the woods with my dog. The day may come where I may be unable to do some of these but I will fight with all that I have to see to it that it is no time soon. I don’t understand why others wouldn’t do the same. Perhaps I’ll never understand because no one has ever truly been able to give me any sort of explanation. “They just do.” Is not an explanation to me as it does not answer the critical question of “Why?!”

My doctor doesn’t really understand why I am not like the others. He’s always telling me to slow down, take it easy. When I asked if this would help in any way shape or form, he said it wouldn’t but, it would make it easier. I looked at him like he had four noses. I confound him. He always tries to find excuses for the hypothetical things I ask him, if I were to sit on the couch, and not go dancing would this decrease the swelling and pain in my knees and elbows? He won’t come right out and say no, he prefers to say things like, “It would cause much less pain.” “You’d be more comfortable.” He had no reply to my response of “Doc, no offense but I’m not a couch. I don’t need to be comfortable. Last time I was here you confirmed my long held belief that pain in and of itself never killed anyone.” He just gave me that stare, as if I had four noses. There is obviously a communication issue here. I simply shrug and do as I’ve always done. He looks befuddled and scribbles things in his notes.

Maybe I’m a freak, and a weirdo, but there has to be more to life than simply “being comfortable”. What about being enthralled, excited, thrilled, delighted, engrossed, awed and even overjoyed. I find these things each and every day in the things that may bring me pain. There has always been a deep contentment for me in working in my yard or on my home. There is a satisfaction I cannot describe. Why not do that if it’s somewhat “uncomfortable”? Admittedly there are days when even I can’t do as much as I really wish, like the painting of the bathroom, but it will get done. Most likely I’ll finish it tomorrow. Is it so wrong to live by the philosophy “Why put off til tomorrow what you can accomplish today? That leaves tomorrow for you to experience something else.” If it’s not, why does it seem like I’m a freak for thinking so?