Legacy of Loss

ALS, a single card in the deck, “00” on the Roulette, what are the odds; you get the idea. It’s Random, as random as it comes. For most that is certainly true. After genetic testing it does turn out I am as random as they come. This bodes well for my children, to say the least.

But what of the small percentage who’s draw from the deck is the same card generation after generation. Familial or hereditary ALS strikes upward of 10% of cases, leading to a legacy of Loss. Not being in this group I can’t imagine the weight this caries. I wouldn’t presume to know, but having engaged with those who are living with this form of ALS, I have observed this.

Resolve, two divergent forms of resolve that is. Both requiring unimaginable courage, the likes of which can’t be put into words..

Some are resolute in their desire to know, understand and expand the science of Familial ALS. Taking on the weight of knowing what is in store, offering their history and anything else to contribute to treatments or a cure. Diving into the deep end of ALS science and research. Living with the knowledge that the switch to activate ALS resides within their DNA. Resolute in their objective; end ALS!

The second form of resolve is completely in opposition of the first. Not oppositional in a combative way, but a different philosophy or outlook. This group of individuals doesn’t want to live knowing if they carry the gene(s) that trigger ALS. They already know it is a legacy the family has. However they want to live their lives unaltered by the knowledge. Should they develop ALS, they will confront it at that time.

Neither approach should be judged, but each have a profound effect on the families affected. One challenge both approaches share is, informing children, if there are any, or if this is a new development in the family history.

Here in is the dilemma; do you inform your children or siblings. If young, do you burden them with this knowledge? There are considerations to be weighed, best discussed with your medical team or a genetic counselor. This is truly personal and weight decision, not easy by any means.

I am deeply saddened by the legacy of Loss you have to endure. I pray a treatment, or better yet a cure, is developed soon to take away the weight of either existence.


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