The Unknowns in an Unknown Disease


Life isn’t always straight forward. It’s not really a newsflash to say that, I know, but as I lay in pain with two legs that had major surgery eight weeks apart, facing a future filled with so many unknown elements, all I could think is that life just isn’t straight forward.

I have been told recently my bone biopsy revealed “dead bone.” That’s it. No explanation, just a sigh of relief from my surgeon that we put a rod up the leg as it was definitely going to break. I was relieved too, but I was also left feeling more annoyed at my body, frustrated that it refused to give up enough information to help my medical team find a definite, specific diagnosis. It teases us with snippets of information and then spectacularly, physically, breaks down in a way we didn’t see coming.

My endocrinologist keeps saying, “Good news, it’s not such and such,” whenever a test comes back negative. Last time she said that I explained to her that while it is good I don’t have mastocystosis, blood cancer or some other such thing they suspected, being told I have a rare disease, something that has not yet been given a name, is probably a genetic deformity, and is an idiopathic disease with an unknown prognosis, is actually worse than being told I have something known by the medical profession. She asked me why is that worse. She wanted to understand why I would want to know that I have a known disease that could be terminal or that has no treatment.

My answer? I need answers. I need to know exactly what I’m dealing with. I want to know the prognosis. My doctors have no idea the path my disease will take, although they know it’s progressive in nature. We have already been surprised by a scary pathological femur fracture and now my bone marrow is being damaged. I am being constantly patched up and enduring difficult surgeries and recoveries as a result. We know I have rheumatoid arthritis and my medical team are unsure if this links into the bone disease or not.

I want to be able to prepare for what the future holds in some way. We all, in general, like to plan ahead in life. We plan for retirement, we plan holidays, we plan special events. We look forward to things. It’s called living.

I’m in limbo. I’m in pain. I face more surgeries and an unknown future. I’m so tired…no actually, I’m exhausted.

I need to deal with this though as answers may not be forth coming, not the sort I am after anyway. I need to be prepared for more of the unknown, more questions than answers. I need to be strong, stay strong. I need to find ways to live in the limbo.

I will find that strength but at this precise moment I need to grieve for what I’ve lost. I know that grieving is all part of arriving at acceptance.

When I worked as a change management consultant, I used a grief model with organizations dealing with massive change called the “Five Gs of Change:”

1. Griping. This stage is when you feel like you just can’t do this. It’s all too much

2. Groaning. This stage is the complaining stage. The “woe is me stage.”

3. Groping. In this stage you begin to walk forward as if in a forest, moving the trees out of your way so you can begin to see a little clearer.

4. Grasping. You begin to understand what the new situation means. You begin to focus on solutions rather than problems.

5. Growing. You embrace the new, find ways to live again and acceptance brings peace.

I’ve journeyed through this model a number of times over the years and I think I might be traveling through it again after my “dead bone” news. Hopefully I will begin the growing stage again very soon.

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