Tuesday, June 24, 2014

Changing the Pace...

Rush, rush. Hurry, hurry. Must keep up with the pace of life...

For all my life I have been on that kind of pace. Sure there have been periods when life slowed down a bit and there was little to do, but before long the pace went back to a fast clip, demands and obligations creeping back in to intrude on the down time. And as much as I sometimes bemoaned the many things I was juggling, I really felt like I was at my best when I was that juggler with all the plates spinning and balancing them with rarely one dropping.

Something changed in the last 5 years, something I did not expect to see until many years down the road, I am slowing down. Some of it I know is depression over the death of my youngest grandchild and estrangement of one of the most important relationships in my life. Some of it are other causes I will not go into here. But most of it is my body which is betraying me and I for one don't like it.

I've had minor physical issues for as long as I can remember. Foot deformities in infancy resulted in corrective procedures. Always a klutz, I had my fair share of issues because of that. Minor long term upper respiratory issues meant I could count on getting a bug pretty regularly.
Nothing that really slowed me down for long. Back on my clarinet a week after having all 4 wisdom teeth extracted because state competition was coming up a week later and I had to practice. I was into my 3rd week of undiagnosed walking pneumonia while in college before I finally broke down and went to the doctor.

The slowing down I'm going through now is the slowing most folks don't start to deal with until their 60's, 70's or even 80's. I am not yet 50. I know I'm not alone as hear a lot of our older Marf's talking about how they are feeling the effects of their condition at an age younger than non-Marf's, but how much is truly Marfan related? That's a good question.

I look at my Marfan husband. He started this type of slow down years ago after his aortic valve & artery replacement surgery. That makes sense. I see that regularly in the Marfan groups I am in. Some folks actually do better after  surgery, but a big number are also just not able to get back to anywhere where they were before hand. I have not had heart surgery so I can't really look at that as a factor.

What happens when Marfan tissue ages? Since the average lifespan
for many years was little more than half of that for the general population, there were no serious studies on the effects of aging in Marfan so no one can say for sure. The good news is the researchers are finally looking at this aspect so we hope to have answers very soon...

My Hubby & I are lucky, slowing down
gradually, having some time to adjust. Just this weekend a young athlete at the peak of his prime, a newly diagnosed Marf, has suddenly had to face what it took us years to adjust to... to change gears and suddenly STOP doing the very things he planned to do at this time of his life... He is suddenly facing a very different future, but it does not have to be a bad one.
Our Double Marfan family have been keeping him in our thoughts ever since we first heard. There will a lot of changes and adjustments, that is normal. He is heartbroken, it showed in his reaction. Understandable.

Isaiah Austin's dream to play in the NBA may be gone, but he is finding other ways to dream again...  :-)

If there was one piece of advice we could give, it would be: Stay close to your family and faith, listen to your doctors & you will do well! God Bless you Isaiah Austin!

Check out how
Isaiah Austin is reaching out to help The Marfan Foundation, and through them, ALL affected by Marfan Syndrome!

Isaiah Austin says he is "Letting God lead the way. Become a part of my story and support the Marfan Foundation. #DreamAgain" - Isaiah Austin

Please check out Isaiah Austin's "Dream Again" Limited Edition T-Shirt in support of the Marfan Foundation!


#Marfan #MarfanFoundation #NBA #Isaiah_Austin

No comments:

Post a Comment