Progression vs. Hardship

One of the frustrations with having SCA3 is with telling people I have it, especially in the early stages when my symptoms were not outwardly apparent. As the symptoms intensify, telling people about it gets even weirder, because it’s still not particularly outwardly obvious. I have yet to deal with the later stages.

Triassic period (AKA early stage)

In the earliest stages, it’s about progression but not hardship.

If people asked how the disease was affecting me, I described indicators of disease progression while not trying to make points about hardship. I think I was often misunderstood. Some examples:

In the earliest stages, I found that I could no longer look up at the stars while walking without losing my balance. My point? I wasn’t making claims about hardship. I used to be able to do it; now, I can’t; therefore, the disease has progressed; my cerebellum is more degenerated than before. My perceived reaction back to me? “So what? If you can’t do it, just don’t! No big deal.”

Standing on one foot is almost impossible; hopping on one foot is impossible. My point? I’m not making claims about hardship. I used to be able to balance better and longer than I can now on one foot; I certainly used to be able to hop on one foot, which has long been impossible. Therefore, the disease has progressed. My perceived reaction back to me? “How old are you? Five? What reasonable adult cares about hopping around on one foot?”

I say “my perceived reaction” because I’m heavily interpreting, maybe even heavily distorting, what people might have been thinking, but I hope not to the point of building a straw man.

Jurassic period (AKA middle stage)

In the middle period, it’s about progression and hardship. Yet my claims of hardship can be greeted with skepticism.

The most common response to me describing my limitations is for others to say that “I can’t do that either” or “I have the same problem.” If someone else truly has the same limitation, even if they used to be able do it and can no longer, it’s not an indicator of disease progression for them like it is for me. And if the limitation is not a hardship for them, then they likely think that I’m complaining about negligible and normal things.

One effect of having this disease is extreme mental exhaustion. See here. This can be seen as extreme laziness. If I say I can no longer do or enjoy doing something because it’s become too difficult, others might say, “It’s hard for me, too.” Whether intended or not, the message I pick up from that is skepticism of my worsening condition. “It’s hard for me, yet I do it. If it’s hard for you, that is normal and you should also be able to do it.”

Everyone is working hard to get through life. Nothing is inherently easy for anybody, even doing hobbies that one enjoys. With ataxia, the difficulty of most activities is unnaturally amplified to the degree of being impossible or at least entirely unenjoyable, which makes many things pointless.

Cretaceous period (AKA late stage)

I’m still in the middle period, so I have the late period to look forward to.

I realize I’m bumping into the general complexity and awkwardness of social interaction. I recognize the social instinct to say, “me, too,” as a way to bond or commiserate. The accelerated aging aspects of ataxia do mean many symptoms overlap—on the surface—with those of an aging person—i.e., the rest of the world.

The end result for me has been learning not to talk about it, which is part of remembering that most people don’t want to hear about my health problems anyway.

3 Replies to “Progression vs. Hardship”

  1. Jens-thru my low moment. Rather cathartic. Shocked by level of emotional response to progression of ataxia symptoms. Canada has a well developed position for a supported end and that is comforting. Depression of course is a natural result of the stress associated with ataxia.The angst that we experience takes away a rational and quite often educated response from friends and family.ie. (but you look so well). I am staying away from drugs for depression and researching other treatments that individually might work for myself. Meditation is in its infancy but worth exploring. Moral of the story is not to jump to conclusions too quickly. There are options . The final exit is still many steps away. Brian Law

    1. Four of my relatives made the final exit due to SCA3 in the last few generations (grandfather, uncle, cousin, mother), and my sister is about 10 years ahead of (worse than) me. Because it’s hereditary, I’ve pretty much known what to expect years before symptoms began. I hope you’re not facing this alone.

      1. Jens-I am not alone. Loneliness is definitely a stress cursor but fortuneately I have a supportive, intelligent wife. Your self reports on “About Me” appear valid, based on my experience and are an excellent heads up for my wife. A recent , completely unexpected crying jag to a new acquaintance/friend not only out of character and thus embarrassing in hindsight. Finding the energy/courage to address this event with her is forth coming. Wish I had a card like some deaf mutes to inform significant others. As Winston Churchill said K.B.O.-Keep Buggering On. Brian Law

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