Friday, January 21, 2011

Is There Anybody Out There?

     My husband is my perfect match, which is something I don't believe many people can say. They might say that they're well-matched, or that they make a good team, but it's not often one comes across a couple that seems so right for each other that others look at you with envy and say how they wish they could have what you've found together. I'm one of the lucky ones, I know that. I say that knowing full well that our time together hasn't been and won't ever be like that of the vast majority of couples. My husband was born with a degenerative genetic disorder called Marfan's Syndrome and there is no part of our lives that it doesn't affect.

     When we met, it was as co-workers. Over time, we developed a friendship, which then evolved into a deep and true love. "True love" is a phrase that's often overused, often scoffed at and seems better suited to fairy tales than to life in the 21st century. Whatever. It's the most accurate phrase that I can come up with to describe what it is that I've found. Every day I wake up with him, I'm reminded of just how lucky I am that we found each other at all, when the odds were against that.

     I think, to some degree, that anyone can say it's a miracle they found each other. They may be from different corners of the world, they may be trapped in other relationships, they may be any number of things that would prevent them from finding the love of a lifetime. I, however, have even more reason to be grateful, given my husband's condition.

     The simplest way to describe Marfan's is as a connective tissue disorder, though that makes it sound much simpler and less destructive than it actually is. As I mentioned before, there is no part of our lives, past, present and future, that is not affected. It's the day-to-day fear that he will try to lift a box that's just a little too heavy, rupture something and lay bleeding internally while waiting for help to arrive. And what if help comes too late? Or the fear that someday, we won't be able to make ends meet (because there's no way in hell that he's going to make it to full retirement age).

      And to those who say, "Oh, he can just go on disability," I say, that's a lovely idea in theory, but IF he qualifies for SSDI (Social Security Disability Insurance), there is a full five month waiting period between the time he's approved and the time he begins to receive his benefits, which are only 80% of his previous earnings, by the way. We're on a tight budget to make it work with the full-time jobs we both currently have, so tell me how losing a full 20% of that income is anything close to okay.

     The questions and thoughts and worries that go around and around in my head every day are always there, to varying degrees, and I don't really have anyone to talk to about them. When I went to the all-powerful Google to ask for assistance with finding other "Marfan spouses" (my exact search phrase)...I got nothing. You know how the little search box will bring up suggestions as you're typing in what you're looking for? Yeah, not this time. If my computer could've cricket-chirped back at me, it would've.

     So I've decided to start writing, both for myself and in the hopes that I'll find a kindred spirit or two along the way. I know there are more of us out there, men and women devoted to partners who suffer from this particular illness. I don't know exactly how to find you, so I'm hoping you'll find me. I'm going to keep writing, verbalizing all the hundreds of issues unique (and some perhaps not so unique) to the partners of Marfan's Syndrome sufferers. I'm going to keep searching for people like me and while I embark on that journey, I'm going to try to create a space, however small it may be, for those people to come and talk and share their fears and their hopes. Wish me luck.


Sischo Family said...

I'm here! My husband has Marfan Syndrome too. We have been together now for over 14 years but only married for 6 years. My hubby was hesitant in telling me about his diagnosis too. It is a lot to take in when the relationship is just starting. We have a little boy who also has Marfan Syndrome.

Kristin Lee said...

I can't even tell you how happy I am you're here. Honestly, even if you never come back (though I very much hope you do), I'm so relieved to know that you're out there. Logically, I knew I wasn't the only person in the world who's married to someone with Marfan's Syndrome, but damned if people like us aren't few and far between. Thank you so much for speaking up, giving me proof that I'm not alone in this.

Ms. B said...

Hello - I just found your blog. I have marfans syndrome and therefore understand how difficult it can be for the spouse and the one suffering with this terrible disorder. I have had feelings very similar to your husband, that I am a huge burden. My husband does not always know how to try to make me feel better. He watches my daily struggles with the pain and I think it hurts him that he is unable to do anything to make me feel better. I've just started reading the blog and I will definately chime in from time to time. After I've read it I'll share it with my husband. Thanks.

Beth Harper said...

I recently stumbled upon your blog about a week ago while scouring the internet for related diseases and issues with Marfans. I’ve read quite a bit of your journey, though haven’t gotten around to reading it all. You are most definitely not alone. I’m currently in my early to mid-twenties and have been dating my “to be husband” (boyfriend sounds too casual and can’t express properly how much I love and care him) for almost 10 months. He is in his early twenties and was diagnosed with Marfans when he was around 15 or 16. In the past month I’ve been trying to catch up to speed on his doctor’s appointments that had been neglected by his parents. Though, I don’t blame them. They do the best they can with what they have, and so do I. It’s definitely a struggle trying to balance out work, appointments for him and myself, the emotional and mental exhaustion of seeing him in so much pain and knowing there is little to nothing I can do to help. Along with Marfans, he’s also been diagnosed with Fibromyalgia, Chronic Pain Syndrome, and of course, Scoliosis. He’s had two surgeries. One for retinal detachment and pectus repair for his concave sternum. I too have my own illnesses that bear weight on me, mostly psychological. Recently, he fell and hurt his lower back severely. We had an appointment set up to get him in to see a new PCP since he hadn’t had one in a while, but he was in so much pain I wound up making a same day appointment the day after making the PCP appointment. Luckily, his spine is fine, but it is definitely swollen around his spine. The PCP we saw is referring him to Pain Management (Thank god) and setting up an MRI that I told him was needed because I wanted to know if some of his pain could be caused by Dural Ectasia. He has always dealt with pain and a few years back decided it’d be best if he got himself a cane. He uses it on a daily basis all day due to not being able to put weight on his left leg. He starts physical therapy this week, and I’m hoping that maybe he’ll be able to gain some of his muscle strength back. I know it’ll hurt him like hell, though. Anywho, I'm only just starting my journey with him and reading your blog has helped me and taught me quite a bit. It's nice to know we aren't alone in this daily struggle. I just hope that the doctors will be able to find him some relief from his pain. Mornings are the worst. It tears me apart to see him hurting so much. And I may not be able to feel the immense amount of pain he's in, but seeing him like this gives me my own gut-wrenching pain. I absolutely love him and plan on sticking around "until death do us part." I'm aware it won't get easier, but I'm hoping I'll be able to build up the strength to keep him and I going on this wonderful and terrifying journey together.