The Uncertainty Of Knowing
Writing this blog has been good for me. It has really given me a chance to look over the challenges my family has faced, but the truth is I’ve slowly moved myself further and further away from the issue. I guess in a way it allowed me to continue writing without getting sucked into the whirlpool of reality. It hasn’t been easy.
This all began with my wife’s bowels not working, then spiraled. Her fingers changed colors, her muscles weakened, she had trouble breathing, she had constant chest pain, she had back pain, she had swollen lymph nodes. That’s only a handful of the problems she faced and continues to face. On top of the medical issues she had multiple CT Scans, a biopsy of the lymph nodes, X-rays of her limbs, and blood tests, over and over again. We’ve been worried its lymphoma, thyroid cancer, lupus or another autoimmune disorder, and even worried it was somehow nothing at all.
Systematic Sclerosis was both an answer to prayer and a nightmare. Yes, we knew now what we were up against, but we also knew what we were up against. All the testing, all the issues, all the wondering was finally given a name, but even then, even when we finally got a reason for it all, we weren’t certain.
My wife had mentioned Systematic Sclerosis to her doctor at the very beginning of this road, but he had written it off as a rare disease she was unlikely to have. Moments like that defined my wife’s future. She would go on to distrust a lot of the doctors, and, while still taking guidance on care, trusting herself more. Her entire diet changed because of this disease. It was her way of taking control of the situation. It wasn’t till this September she had a doctor official suggest a diet change for better symptom control.
I admire everything she’s done with this journey. It hasn’t been easy on either of us, but I have no idea how hard it has been on her, mostly because she wears her burdens so seamlessly. She doesn’t always see it that way, and there have certainly been times the challenge has been too much to bear. It was that strong attitude that got a doctor to do a CT of her lymph nodes. That CT found issues in her thyroid. Issues that are, in real time, becoming very important in our path forward. But at that time they were only worried about lymphoma so they biopsied the lymph nodes. It was because of that negative result of lymphoma we were forced to come full circle. Because of that test the doctor was forced to take more blood and do more tests, tests that resulted in the findings of Systematic Sclerosis.
How do you put all that into words? How do you describe the uncertainty of it all? You can’t. You want to hope, but if you hope too much it will look like you don’t care. You want to worry, but if you worry too much it will look like you’re falling into despair. What you’re left with is sitting in the kitchen washing the dishes, and a thought pops into your head about how much you love your family. You take a moment to feel that love, but suddenly it evolves into worry. You start to worry that your wife isn’t just napping upstairs, maybe she’s gone, maybe her spirit is standing with you trying to help you see the beauty before your life changes forever. You want to go check. You want to make sure everything’s okay, but she’s resting. You say to yourself over and over again she’s just resting, while the back of your mind wonders if she might be dying and needs you to come be with her in the end.
Despite knowing so much, we know so little. Tomorrow could be just a normal day, or the last day. Isn’t that always true though? That’s the reality of life, but this feels unfair. You don’t really want to know, but you also need to know. It can’t be better without knowing, but knowing doesn’t make it better. That’s the uncertainty of it all. That’s what Systematic Sclerosis is, a circle of can it help vs will it help. Do I have a lot of time or no time? Oh, the uncertainty of knowing.
Jacob Gittins 