Note: The following was originally written for The Lupus Magazine. As it is no longer online and I would still like people to be able to read the articles I wrote for that magazine, I am dumping them all here. Originally published March 2011.
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To say I have too many things on the go at the moment would be a huge understatement. My time is becoming more and more finite. I seem to be running from one crisis to another. Balls have begun to drop.
When these things begin to happen and I start to feel as if I am in crisis, I try to reach out. When I reach out, the main thing that I need is to just vent. You see, I have a process. I am the type who quietly contemplates, as I figure out the solution to my current problem. Once I am done contemplating, I move on to fixing the situation. But before I can do that, I need to vocalise it. Until I vocalise it, in my mind, the issue is not real, but rather come abstract concept. So when I vocalise it, it is only to be heard.
A lot of the time, people forget this. They offer up unwanted advise, thinking they are being supportive. They tell me things that show me they have no idea who I am, what I need or why it is that I do the things I do.
And then someone will do something, something small, which shows me they actually pay attention to the way I work and the things I need. And this something small gives me some added stamina to fight my way through the things I cannot give up, without giving up who I am. Tonight was one of those nights.
I had to cancel yet another appearance because I’m really having to pick and choose where my time is going. I came very close to not even having an article for the March edition of The Lupus Magazine. Then one of my staff members, Egberto Willies, decided to give me one of the best gifts any one has given me in a long time. He asked if he could write something for me. And in the process, I came to realise he actually sees me and hears me. All it took was for me to say one sentence and he knew.
You will find it below. I’m not going to give any more back story, as I feel Egberto has said all that needs to be said at the moment. And I am thankful.
An Ode To An Overworked Lupie
Feeling sympathy for a fellow human is easy. Being empathetic to what someone is going through requires the ability to feel someone? pain through personal experience or being in close relations with said similar experience.
It all started with a Facebook IM from a dear friend who asked me to listen to his radio show on the TheForce925.net. After listening I spoke to him about a political talk show and he immediately told me to contact Julia Sherred, the Assistant General Manager and Programming Director of the station. She set up a Skype meeting a week later and my ode to my overworked lupie began.
She accepted me on staff after a short discussion of what I wanted to do and our discussion turned immediately to Lupus. Interesting enough my wife has had Lupus for the last 18 years or so. As such I am well aware of the pitfalls, the pains, the fatigue, and simply the desire to sometimes give up. I am well aware that you can be fine now and 20 minutes later be as sick as an 80 year old.
I build websites and write communication software for a living. As such I am well aware of the amount of time and mental fatigue in building a site from scratch. Moreover, configuring a server and ensuring as close to 365/24/7 uptime is an ardent task. Julia did much of that in just a couple of months. This had to be extremely stressful. Lupus sufferers know that this is a sure way to trigger a Lupus flare.
Most Lupus sufferers I met over the years were complainers that never attempted to supersede the disease. My wife was one of the few exceptions as she was very involved in a myriad of activities including strenuous exercise which many Lupus sufferers run from. Meeting Julia was refreshing because it was inspiring meeting another person with this chronic disease that excelled not only over other Lupus sufferers but over many a healthy person.
Julia is a regular guest on my political show on Saturdays. She sent me a short email saying she would forego my show this weekend because she was tired. Knowing Julia and understanding the disease made me cognizant that there was more to that one line. That one line from her meant she was approaching that breaking point. That one line meant Julia was in trouble.
I Skyped her right away and pretty much demanded a factual answer. She said she had to write an article, take care of her kids, and take care of her KIDS; KIDS being those who should be able to take care of themselves. I knew what I had to do. I asked her to let me write her article, this article. My prose here on Julia is exactly what a Lupus sufferer needs to hear. My prose here is exactly what a Lupus caretaker needs to hear.
As long as one can remember that we all go through issues it is imperative that we maintain a degree of positivity naturally or forced. You see, a Lupus sufferer can be active, sick, vulnerable, strong, productive, tired, effective like any one of us just through a different biorhythm some of the times. You see, my ode to Julia is also an ode to you.
