Saturday, October 10, 2009

Tears Today

The mountain-top emotional high of finally having answers has led me to exhausted tears today. Don't get me wrong. I'm still so amazed and thankful about the discovering of XMRV and it's link to CFS / XAND. I am still every bit as thankful for the diligent work of the Whittemore Peterson Institue (WPI).

But today the tears finally come. Tears of thankful release after years of pent up frustration over lack of answers. Tears of exhaustion on all levels, from physical to emotional. Tears of feeling overwhelemed at the road ahead - it feels like the past 19 years of my illness have simply been walking the road to find the starting line, and now that we've finally found it, now there is still the whole marathon to run ahead.

What have I exposed my family to? What will be the long term impact for all of them because of every decision I've made thus far? I'm glad I was blistfully ignorant when I choose to marry my husband (and obviously to engage with him in a sexual relationship) or when we set out against the uphill battle of infertility. I was ignorant of the fact that I am positive for XMRV (and yes, I was part of the test study, and yes, I did test positive). I'm so glad I didn't know, when I choose what I believed to be the healthiest possible choice for my babies, to breastfeed them, that the retrovirus XMRV is passed through bodily fluids.

Had I known, would I have made any different decisions? That's an impossible question to answer, for I look at the 4 most precious loves of my life, and I cannot imagine any different path than the one we chose; I cannot imagine not having any of them or the wonderful memories we have built together. So I'm thankful I was never in the position to make that choice, though I did try to break our engagement long ago (because of my fears over my health) and my husband would not hear of it, so for the question of marriage, I know he has no regrets and I find that so amazing! I do find myself grieving anew Noel, Joel and Hannah, our three precious babies who did not survive to live birth, and wonder again, with this new information, what role my health played in their tragically shortened lives.

For those earlier on the path than I am, I feel for you in those major life decisions that still lay ahead of you while so much unknown still lies on the table. I am very thankful to know that XMRV is not airborne nor is it passed through casual contact such as touch. While I can't help but wonder, and we obviously need to pursue testing for them, we do not even know for a fact at this moment that any of my family members will even test positive for XMRV. (If they do, that will be their story to tell, not mine, so I will not be posting medical information about any of them unless they some day ask me to.) It is simply the very fact that they need to be tested at all, because of their intimate relationship to me, that breaks my heart, and for that I also find myself in tears today.

If I have cause them harm already by what I did not know, what can be undone by what we discover now? I have to see this whole "starting line" as a wonderful window of hope, not only for me and the millions living with active neuro-immune illness already, but also for those who may have been exposed through our ignorance, that they might be spared our trials in the future because of where we stand today! Should XMRV prove to be the underlying cause of fullblown CFIDS and even possibly other neuroimmune conditions, then this discovery could mean a significant chance for a normal life in their futures!

It's so easy to feel undone, overwhelmed, anxious about all the what-ifs and could-becomes. Instead I simply must take one day at a time, watch this process unfold, and pray for great wisdom for the wonderful people who have dedicated their lives for seeking our answers and offering us hope. Tears come with the territory of CFS / XAND. My hormones and emotions can take wide swings and fluctuations by the very nature of my illness. Today is a tearful day and that's just the way it is.

1 comment:

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