We had a storm this past week, and the wind blew the rain side ways as it came down. The effect on the tree in our back yard was striking as it split the face on the tree right down the middle. It seemed to be the perfect standard for my thoughts on Tysabri, a drug I’ve take to slow the progression of my multiple sclerosis. It fits my limited understanding of Yin and Yang.
I was asked in a recent survey about my high school what about my life makes me feel most successful? I went back to my goals coming out of high school, and the first goal was to make enough money for money to never be the reason I can’t follow a dream. Then from the time A came to live with us, I have been telling my kids, I have nothing more valuable to give them than my time and attention. The survey came to me on the right weekend, because it reminds me of the real answer for what about my life feels most like success.
Success is realizing that while my time and attention may be the most valuable things I have to offer my kids, all that I give them is returned to me magnified and multiplied as if seen in some carnival mirrors in a mad house. Their love is the sunny side of the face.
The time and energy I have been given to spend with them after feeling so rotten my first 9 months after being diagnosed with Multiple Sclerosis have been a blessing. The drug has enabled the parts of my life of which I am most proud.
On Tysabri in this article : http://www.medicalnewstoday.com/releases/261719.php
I hate seeing the bit on what happens when a patient stops Tysabri. I’ll grant it was only 7 patients, but the most common numbers thrown about are 1 in 3 has MS rebound. So for all 7 patients to have new lesions in 11 months …(forget that they all had 40 to 70 of them) would be 1 in 2,187. With the average disability score changing by 3 points with the now treatable brain infection (PML) being the rare potential downside of continuing Tysabri, I think the odds behind patients choices on whether to stay on Tysabri may be changing by the week.
Of course after 78 infusions, I wasn’t thinking of changing now anyway.When I started Tysabri, J and I said give us 5 good years over 30 crappy ones. As I am 6.5 years in, I find myself more than willing to make the same deal again. Still, it’s a sobering realization there may be more to consider than whether a new treatment is as effective or better than Tysabri. Simply getting off Tysabri looks like it may bring on an even more aggressive MS. That is a scary thought when I think about how aggressive my MS was before Tysabri, long I have been on the drug and the lack of studies about the impact of being on it 10+ years.
As a set of good foster parents lose their kid back to parents whom nobody but the judge thinks will do a good job raising, it hits home how little time we have with our kids. Whether we give birth to them, adopt them or foster them, nothing is promised. Furthermore, the possibility of love separated (yin) is always the risk within the yang of love. As great as the yang of love can be, nature seems to favor balance which I suspect is why the greatness of love seems balanced by the horror of love seemingly heedlessly lost.
Maybe that’s why my favorite coupon in the coupon card book from my daughter is the one for a hug. Their sadness reminds me to cherish our nighttime rituals, even when I am tired. How long will we enjoy them?