Cancer is ugly. I don’t think that’s a great secret for anyone. Granted, MDS doesn’t have any obvious, direct symptoms. It’s the friends that it brings along that cause all of the problems. But those friends are bad enough.
Anemia is the obvious one. It is hard to ignore the weakness, lethargy, and dizziness that highlight it. Even more annoying is the constant ear ringing and the supreme weirdness of being able to feel your own blood flowing through your body.
Along the way, neutropenia joins the fun. The hand washing dries your skin. The diet restrictions make you crave a rare steak with every fiber of your being. And while it has your immune system all haywire, it turns itself and all of a sudden the sores of Sweet’s Syndrome appear.
Beyond everything else is the mental toll it takes. It is still taboo to talk about depression, but I don’t care. To be an invisible illness, it has been the most real and consistent aspect of this entire journey.
I’ve always been quite independent, and not to mention hard headed. The transition from always being the one to drive to having to be chauffeured everywhere takes a mental toll. Not being able to go and do the job I love takes a mental toll. Not to be able to take a shower without wearing out and having to lay back down takes a mental toll. The stress of making medical decisions takes a mental toll. It all adds up very quick and becomes extremely overwhelming.
There are days I don’t want to get out of bed. Sleep is a welcome relief. Or, depending on the day, the thought of facing dreams seems overwhelmingly terrifying. I don’t want to think, move, or face reality. Or I’ll be having a good day, and something will make me crash, in almost a heartbeat. There is no way to prepare for that.
At first, I was so embarrassed about the depression that I didn’t want to tell anyone about it. But as it got worse, I had to. Just the freedom of being able to say, “physically I’m doing well, but it is an emotionally rough day,” worked wonders. Other times, I ended up curled up in bed listening to hymns until I got into a better head space. There is nothing wrong with being depressed. Take a look at Psalms 22:
My God, my God, why hast thou forsaken me? why art thou so far from helping me, and from the words of my roaring? O my God, I cry in the daytime, but thou hearest not; and in the night season, and am not silent… But I am a worm, and no man; a reproach of men, and despised of the people.
There are other examples all through scripture. The entire book of Job describes a man going through trials and being discouraged. But, just as God had not abandoned David, He did not abandon Job, and he will not abandon me.
I take comfort in that no matter what my body is doing, no matter what point of the rollacoaster my emotions find themselves, it is well with my soul. That simple fact is what lets me crawl out of bed in the morning and face the roughest of days.