I am not that person… I am not good with commands and performances.
I am supposed to be working on the book. My book. “Taking Me Back” the semi-autobiographical journey of learning how to live with and help those affected by Invisible Diseases.
I love to write. Writing is not only my passion, it is therapeutic. Why, then, can I not sit down to work on those last three chapters?
Steph working on her latest writing project.
Throughout this journey of becoming an author (and disabled), I have most enjoyed the connection with others. This experience has allowed me to open myself up to the world, primarily through my blog (so far). The result has been that you, the reader, has opened yourself up, too. Where do you think most of my book material is from? It is not just MY story – it is: Tara’s and Mike’s and Melissa’s and Stephanie’s and Devon’s and Jessica’s and Erika’s and Michelle’s and Lisa’s and Steven’s and MANY MORE!
In the book, I am honored to tell your story. I connect with your story. My PURPOSE for writing the book is to make sure that your friends and family and spouses and colleagues and other loved ones get a better glimpse into your life so that they can better relate to your condition, needs and so they can love you greater…
These last three chapters have been a challenge for me. Their tentative-titles are:
- The Grieving Process
- The Difficulty of Getting Diagnosed
- Being More than Your Disability
What I have found recently is that no matter how much you attempt to educate others on a disability, there are always those who are uncertain (or disbelieving) and there are those who are over-protective.
I am the over-protective type.
Encouragement goes a LONG way!
I was working on my new website yesterday and, while it was “live,” a Scoliosis doctor hopped on my page. He found one of my posts and left a comment. In this comment, he told me that I should have done more “scoliosis-specific exercises” and I should not have had the surgery; in fact, if I had seen HIM then I could have avoided surgery and I’d be healed. Then, he referred to his Scoliosis treatment center.
"Greedy Doctor" from: grinningplanet.com
I was infuriated! This doctor obviously did not read ANY of my posts – nor did he bother even skimming over the new “About Steph” page that gives a quick timeline of the events leading up to my surgery and, unfortunately, my DISABILITY. Even worse, he tried to get FREE advertising on my website by feigning concern over my “situation” and misleading YOU, my readers, into thinking that THIS was a doctor who cared enough to comment on a “poor girl’s blog…”
DISGUSTING!
One of the main reasons that Brandon first approached me to create my own website was so that I could control the advertising content on my page – not Google or Blogspot or any other blogger-domain. Me. I could control who I would endorse and who I would delete. Months ago, when I attempted to allow advertising on my blog, Brandon was outraged when he saw an advertisement for a “laser spine surgery that would fix anyone’s back problems.” This ad made my disability seem irrelevant. It acted as if my ENTIRE life’s story was a lie – that if I would ONLY buck-up and have THIS magical surgery, I’d be “all better…” Immediately, we decided to forbid any external ads on the current blog. Next, we concluded that we would design a website that allows me – the administrator – the opportunity to endorse the companies that want to HELP people and not just turn profits.
THEE Brandon of Brandon Wade Visuals
Since the Scoliosis doctor felt that he had the right to write on my website, I followed the link that led to his Facebook page and posted a comment on his wall. I exclaimed my repugnance at his efforts to “use” my blog to gain patients. (Of course, he immediately deleted my comment – as I did his…).
What bothered me the most about this doctor was what bothers me about many physicians with whom I have encountered over the years. This was not a doctor who was seeking a patient in need and trying to help.
This was a physician who was looking at the patient as a profit, not a person.
Another Greedy Doctor from:lib_.sfu_.ca-website.gif
Even when physicians are NOT concerned about profit, in my experience, it has been rare that I have found one who cares about the PERSON, the PATIENT, the PAIN or the PROBLEMS…
I am very blessed at this stage in my treatment to now be surrounded by a Medical Team who I feel knows me beyond my disability. My Primary Physician, my Pain Management Specialist, my Pain Nurse, my Physical Therapist and my Pain Counselor all know me as STEPHANIE. I am not “patient number 2200978” or “the one with Failed Back Syndrome.” They know me as a woman, a wife, a daughter, a sister, a writer, a Christian and a friend. They know me as ME!
"A Doctor who CARES!" from:copewithalzheimers.com
This mini-feud with the Scoliosis doctor made me more confident in the new website that we are launching on September 1st.
When Brandon and I sat down to design the website, he had his purposes for it and I had mine. Together, we have created a site where ALL people can go who are affected by Invisible Diseases. This is not a website JUST for the patient; it is for the people who LOVE the person in their life who has a chronic condition. We wanted this site to be more than just a blog. I conducted private surveys and asked regular blog-followers: what do YOU want to see on this website? And, I hope that when you see the site, you see what you asked for: information about disability, more blog posts, encouragement, inspiration, links to forums and chat rooms, ways to help your loved one, updates on my book, helpful links to social security disability sites and MORE.
What you will NOT find is an advertisement from a random doctor who tells you that YOUR life could be different “if only” he treated you.
Don’t get me wrong – eventually, I want to open the website up to specialists who want to provide education or services to people who are affected by Invisible Diseases. However, those specialists will NOT be the ones who say, “It looks like you are all better now” because, as I said, that stupid Scoliosis doctor SKIMMED my posts. As we have learned, a disease is INVISIBLE because the one who suffers typically LOOKS GOOD on the outside. I may be smiling on the outside, but my pain is always torturing my insides!
Invisible Disabilities "But You Look Good!" at:redbubble.com
Yes, this post is a bit of a rant… It is a bit of therapy for me… It is maybe even a way to procrastinate from writing the emotional chapter about when Gage and I learned that we should not biologically have children and we had to grieve that terrible moment…
But even more so, this post is to validate that the new website is important. The new website is another way that I can SERVE you – my friends and loved ones – who want to know MORE about chronic pain, disabilities and Invisible Diseases. More so, it is a way for me to protect readers against people like the Scoliosis doctor who want to use and abuse their condition for profit.
ADVOCATE from:uwnefl.org
If I have learned anything over these past years of pain and treatment it is to never be afraid to ADVOCATE for your rights as a PERSON – even if you are a “just" a patient…
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