"Suffering the Slings and Arrows of Outrageous Fortune"

I don’t often talk about my son on my blog – he prefers it that way and I try to respect that. But, today I am going to break my silence and write about him.

Although we are quite certain that he has EDS, the issues he has right now are minor and do not impact his life significantly, so it is easy for him to ignore the whole thing. At 17, and with the invincibility of youth, he doesn’t talk much about EDS and generally goes on his merry way. I find it more difficult to ignore, but I try not to hover – it is never far from my mind, though. It is sometimes challenging to impart wisdom to a 17 year old boy but I do what I can, knowing he is a smart and clever kid who is already more mature than most of his peers. A couple weeks ago, we had a heartbreaking conversation and I was put in a position of being the bad guy, yet again.

My 90 year old grandfather, veteran of both WWII and Korea, was laid to rest with military honors. Luke was one of the pall bearers carrying the flag draped coffin. It was a beautiful and touching send off for a true hero.

When the graveside service and the funeral dinner were done and we headed home, the conversation in the car turned to military service. Luke wants to be a pediatrician but understands the financial ramifications of such a dream and has been told that joining the National Guard might be an good option. Also, our family honors military service highly, so he understands it to simply be a good thing to serve one’s country this way.

Obviously, while I have the utmost respect and admiration for the military, I think this is a horrible idea for him as far as EDS goes and have said so to him as strongly as I could. I thought he had taken that opinion on board and given up such dangerous plans. However, sometimes telling a teenage boy what not to do is tricky.

On the ride home from the funeral, I found out that he was actually still considering National Guard service;  his father encouraged him, likely thinking I was going overboard in my efforts to protect him.

So, I had to tell them both what I had learned about  military service and EDS:

That there are way too many stories of EDSers who have destroyed their bodies in the military- it is the worst possible environment to manage EDS in. Then there is the fact that medical care for EDSers in the military is, by all accounts, very poor – something to consider for his future children, as well as himself.

Worst of all, and this is the death knell for this particular dream, knowing you have EDS going in disqualifies you from serving and, if you lie about it and they find out (and they will, of course), bad things happen. (There are a couple excellent threads on this topic on Inspire that are sadly illuminating.)

He was quiet upon hearing this news – he initially pointed out that he hadn’t been officially diagnosed, hoping that he might be able to slip through. Even his father understood that this just wouldn’t fly and regretfully agreed that Luke needs to adjust his plans. We both sympathized and empathized and apologized profusely. But that just doesn’t seem like enough when you have annihilated a young man’s plans in less than 60 seconds.

Have I mentioned lately that EDS sucks? It is a dirty, rotten thief – if it doesn’t kill you, it takes the things you love and siphons the joy out of life. It steals away the future – plans and hopes and dreams. It is the worst kind of criminal: stealthy and savage, not caring who it hurts or what devastation it leaves in its wake.

Being an accomplice to this thief  is the worst thing I have ever had to do. I have to do all I can to keep my kids safe and I will do so with my last breath, because I understand the long term implications of this condition in ways they cannot in their youth. It is my job.  But, it gets really old to be the one to have to tell them the hard truth that breaks their hearts.

We keep on focusing on the positives because it is the only way to get through – there is so much more to life than gymnastics and the military and any other ‘can’ts’ that might come up. But, it still just sucks and these wounds leave scars that will never heal, no matter how much we focus on the good.

Edited to add: Luke is a strong and resourceful young man – he will push forward with his future with an indomitable spirit. This conversation might have been more painful for me than for him and so I needed to write about it. I just hate that he has to fight this thief for his future. I have no doubt that he will win, however.

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Comments on: "EDS: A dirty, rotten thief" (4)

  1. Our 13 year old wants to join the military as well and we have had the exact conversation on more occassions than I care to admit to. I would love to have him be able to follow every dream he has, but with EDS, a retroflexed odotnoid and one herniated disk (and a second one on the way to becoming herniated) military service is not an option. After our most recent round I was pondering who in our circle of friends and acquaintances was high enough up in the military that he/she could talk to Alex about other ways to serve his country in a civillian capacity. I understand his frustration and irritation but at the same time I have to point out the same things that you have pointed out to your son. Good luck. It so sucks having to be the bad guy and having to stand by and not be able to fix everything.

    • It is hard, isnt’ it? I guess the really important thing is that we know about EDS and can help them avoid the things that can really hurt them. THAT is something to be thankful for!

  2. I have EDS (hypermobility type) & wasn’t diagnosed til the age of 37. But me & my family knew all along something was very wrong with me. As a kid & teen, my dream was to become an archaeologist. But as I got older & it became more & more apparent that I had a serious, oft-times debilitating condition, I sadly realized I had to modify that dream. I wound up majoring in cultural anthropology at a university but even with that, had to bow out my senior year due to complications. It had gotten to the point where I couldn’t endure the stress of sitting in a classroom environment or mounting stairs. Now I work in marketing and am just happy for the little things. The only way to deal with EDS is to come to appreciate each day, each moment. Scale back big plans, learn to be grateful to be alive, to be functioning. Carpe diem.
    Best of luck to you, your son & family…

    • You are right, it is important to be realistic and make good decisions – and be thankful for life itself. It is so hard for young people, I think, to have their plans changed before ever getting a chance to try them that it is hard for them to see that just being alive is a blessing. Realistically, and this is what I tell my kids, everyone has something that challenges them – no life is perfect. If it wasn’t EDS spoiling their plans, it very well could be something else and there are far worse things than EDS to live with. But, that is small comfort when it is EDS changing the course of your life. As a mother, I am broken hearted for them but we have no choice but to carry on and make the best of it.

      Thanks for commenting and sharing your wise advice!

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