Archive for August, 2013

This Old House

michelle nicole photography

michelle nicole photography

I have tattoos, four of them: one on each arm, one on my back and one on my leg. Some people may argue the precision of my counting as several individual tattoos are combined into beautiful collages that encompass the entirety of my afore-mentioned body parts.

I made the choice to use tattooing as a way to camouflage the scars left from the many surgeries I’ve had on my back, arm, pelvis and abdomen. Perhaps this is an unconventional method of scar therapy, but need I say that it is very difficult to be considered imperfect in a world where society embraces the image of perfection in beauty?

For years, I endured the emotional pain of others ignorance that came in the form of stares, whispers and jokes while I sported a large back brace, casts on my arm, a walker, crutches or announced the date of yet another procedure. The catalyst that propelled my tattoo wheels into motion was when I heard the following question while vacationing at the shore one summer.

“How can you wear a two piece when you look like that?”

I was speechless; how does one respond to such a thoughtless comment? I wrapped a towel tightly around my body, not so much to warm myself as to hide. You see, I am very fair skinned and my scars turn a purplish color when I am chilled. In addition, scoliosis and a leg discrepancy have caused a gentle curve to my spine and an interesting twist to my hip and pelvis. I am sure I looked quite abnormal to that young man. I should have let go of the pain his statement caused by now, but it is a wound that cannot properly heal because it is continually being reopened by equally thoughtless comments I hear often.

Ok Jan, so what do we say? I mean obviously you want us to comment because, well look at you-you look like some kind of sideshow attraction at the carnival!

Yup, that’s me, the tattooed lady. I get lots of comments now, some in disgust, and some in amazement. Usually, no one sees the scars until I point them out, so that idea worked for the physical scars by helping me camouflage them, but I am still dealing with the emotional ones. What I would like people to do is to see beyond the physical. I would like people to reconsider their concept of beauty and normal. Growing up, I was blithely unaware of any imperfections thanks to the constant validation from my parents. They touted me as nothing less than the sweetest and most beautiful creature to have graced the planet, and when that pedestal toppled, it proved to be quite a fall! What I would like, is for others to see beyond outward appearance of those with disabilities or chronic illnesses and to see the value of people.

When Tom and I were looking for our first home, we had four small children and a limited budget. We longed for the beautiful house of our dreams; something impressive that had spacious rooms with vaulted ceilings, hardwood floors and intricately carved crown molding.  Unfortunately, what was available to us didn’t have all those beautiful amenities, but we needed to accept it for what it was, a place to live. We had to look past the old appliances in the kitchen, the shag carpet, and the purple walls to see the potential, the value and its worth as a place to raise our children. We had to consider the heart of the home; the foundation was sound and dry with sturdy wooden beams that supported the roof, it was a sound home. This property didn’t look like the models we had dreamt about but once we made the investment, we found beautiful hardwood floors under the unattractive carpet.  We replaced the old goldenrod colored appliances with shiny new stainless steel ones and we painted the walls that for years, 15, adorned pictures of our children as they grew. Had we passed up this opportunity, we would not have forged the lasting friendships in the neighborhood that we continue to maintain. Our children would not have been on the swim team at CCERA or participated in the programs at Faith Baptist Church where our son still plays the bass in the praise band; The 8:30 band.[1]

Friends, I challenge you to begin a restoration project in your heart. Think twice before making a snide comment or a joke that pokes fun of someone who does not fit societies’ preconceived notion of beautiful or normal. If you have a question or concerns about their condition, illness or disability simply ask, most people would be more than happy to explain. Take a step in the right direction; one towards acceptance and teach your children by your own example, to embrace the uniqueness that makes us all valuable individuals.



[1] We are proud to announce the 8:30 Band will be releasing their first CD, Exceeding Great Joy, in November 2013. A link for purchase will be provided in future blog entries and on my web site

All Geared Up

gears all geared up


Bikes: √

Helmets: √

Hydration packs: √

Padded shorts: √

Sneakers: √

Bike rack: √

It seems Tom and I had everything we needed to begin our new adventure of biking*, except for a release of treatment from Dr. Puccio following my most recent surgery, a cervical fusion. We decided that we needed to find an activity that challenged our midlife bodies physically without otherwise damaging said midlife joints, muscles and bones. After much deliberation, we decided that a bicycle, or rather two; having been forewarned by a friend to avoid what he referred to as a divorce machine, AKA a tandem bike, was just what we needed to strengthen our core muscles and our relationship.

 I found myself excitedly waiting for the day that Tom and I could don our gear and saddle up. I envisioned our bodies glistening with sweat, as we peddled side by side; the whirl of tires setting the rhythm for our breathing. Together we would tackle hills with vigor and determination, encouraging each other through every challenge as we traversed the vast expanse of our two-block neighborhood.

Suddenly, my blissful daydream shatters when Tom makes a casual comment. “On the days you rest I will call my friend to get more of a challenge off road.” I felt something pop inside of me as I stared blankly at him. I think it was my emotional bike chain. What Tom said was that he is setting goals and making fitness a priority.


What I heard was, you can’t go because you can’t handle off road biking, you can’t  provide a challenging work out for me, you can’t!


Tommy saw me stiffen, “What’s wrong?” he said sweetly.

“I don’t know.” I sniffled. “I’m having a moment. I can’t explain, it’s just…” I climbed into his lap like a small child seeking comfort. Tears trickling down my cheeks I choked out, “Hearing that I have limitations bothers me, a lot! I just need to get over myself.” Even 21 years after my initial diagnosis and many, many surgeries, I still have trouble accepting that there are activities in which I can longer participate.   


Truth of the matter is; I have exceeded the initial prognosis of being confined to a wheelchair by age 40; at nearly…um…over 40, I can still ambulate. My friend who was stricken with polio as a child cannot; but he is quick to tell you that he is the luckiest man in the world! ”Polio saved my life.” He says with a mischievous twinkle in his eye, a hearty laugh and then continues with a smile that lights his entire face. “It kept me out of the service and off a motorcycle!”

I can drive our car. Some days may be more of a challenge then others and on these days, I need Tom to don his chauffeur hat; but I am able to operate a motor vehicle, something my adolescent cousins who have a severe form of ME/CFS cannot even attempt at this point.

I continued to run through my mental checklist of CAN DO’s, a process called Cognitive Behavior Therapy that I learned through pain management. CBT is a technique used to help people challenge patterns of thinking, replacing erroneous thoughts that magnify negatives with more realistic reasoning. In doing so, one can reduce emotional distress and self-defeating behavior.

Within a short time, my attitude was sufficiently adjusted by recalling all of the activities that I am able to enjoy, even though they may be different now. I was back on track, headed in the right direction, and ready to take on the asphalt, two blocks at a time.


   *Author note: I will continue to nag encourage Tom to revisit dance lessons despite the previous failed attempt aforementioned in this blog; see Flamingo Dancing