Friday, December 5, 2008

Trading Places

Did you ever dream of trading places with someone? I have. I'd trade places with my friend, ****. Well, not places, just ALS. I'd trade MY ALS for HER ALS. You see, **** is in their early 40s and has a rapid progression of ALS. She was recently told that if she does not vent and/or get a feeding tube her life expectancy is 6-12 more months. She started having ALS symptoms in July 2006 and was not diagnosed until January 2007. Six months more would put the time frame under 3 years from symptom-onset to death.

I recently saw my neurologist and was told that my ALS is extremely slow-progressing. He feels that I am likely to be among the 10% of ALS patients that live more than 10 years from diagnosis. I've already gone more than 4 years from the first noticeable symptoms, and just over 3 years from diagnosis.

To illustrate what a "slow" progression looks like (albeit under "ideal" circumstances"), famed theoretical physicist, Stephen Hawking (diagnosed at age 21 with ALS) went 22 years before going on a ventilator at the age of 43. He is now age 66.

Here's the kicker. The "journey" will be the same. **** is just getting from "point A" to "point B" on "the express". I'm taking the "pony express".

**** has a close, supportive family and graduations, weddings and grandchildren on the horizon. **** is a veteran, and recently the VA ruled that ALL ALS is now a service-related disease. She will have the health care benefits that will be needed for the long journey.

**** has lived in their community all their life. Her parents are both still alive. While they are divorced, both her father and mother are remarried. Both sets of "parents" live nearby. **** has two teenage children and her spouse was able to recently take an early retirement from a major national corporation which came with a generous severance package and retirement benefits.

**** retired from her job after her ALS diagnosis. She has a sufficient Social Security Disability income, that when added with her spouse's severance package and retirement, give them the means and ability to maximize the time that **** has left. They could travel and do all those things they couldn't do while they were working at their jobs.

What **** doesn't have is time.

I, on the other hand, have time. However, I don't have family support. I am struggling to live on 115% of the poverty level while attempting to meet the needs of a disabled child. Emotionally and financially I am pretty short on resources. Why am I the one who will languish?

I don't believe God chooses to give us ALS, nor does He choose to give one person resources and another one lack. "It rains on the just and the unjust." Matthew 5:45. Still, if I could, I'd trade ALS with ****.

People say how much "better it is for Christopher" that I will be around longer, and I agree…. to a point. Right now, it is much better. When I get to the point where I can't feed myself, dress myself or take care of my personal hygiene (which will happen and will be a "chapter" that will be much longer than ****'s), I beg to differ. How much HARDER will that be on all of us?

God provides what we need, not what we want. It just all seems frustrating and unfair to me tonight.

Love, Claudia