Bittersweet

It's been a while.

Life has been a whirlwind and I haven't really had a moment to take it all in. I am grateful for the chaos though, as it keeps me too busy to get stuck inside my head for too long...

Today marks the beginning of an exciting new chapter in my life. After eight years of marriage and with our two beautiful healthy boys, my husband and I moved into our very first home. And in so many ways, it is all just so perfect- sunny and bright little Spanish-style, a nice quiet street, shops and restaurants near by and friendly neighbors with young kids all around us.

But as hard as I've tried to just stay with the joy, this stubborn, scary, nagging little voice has been haunting me. And it's been getting louder. I've done my best to ignore it until now, but I'm afraid that what it's been saying all along may be true.

You see, we spent many months looking for a house. There were some basic requirements, such as it having to be a one-story and on the smaller side, for obvious reasons. But in the neighborhood where we were looking, it seemed that we couldn't avoid a house with just a few steps to the front door and a few steps to the backyard. And all of them had layouts that included a hallway of sorts. At a certain point I realized that I had to accept that I wasn't going to find everything I wanted in one house.

Since I wear leg braces every day now, I had only ever gone to open houses with them on, partially because I didn't want to accept/believe that something as silly and minor as a couple of steps could come between me and my dream or worse, my husband's dream. So, we found this lovely little house. Just what we were looking for. And I convinced myself that the steps in the front and the back would be manageable. I decided that if I ever got to the wheelchair phase, then I could easily put ramps in. And if not, then I would just get railings installed on the sides of the stairs. And because of the long hallway, I would just keep my leg braces on all day and night, despite the callouses and the sore spots. That was my logical, rational mind talking.

And here I am. Our first night. I have been on my feet all day, moving since early this morning. It's 9:30pm and I have yet to take off my sneakers and leg braces. I am too afraid. Too afraid of how my body may (poorly) navigate through this beautiful new house and too afraid of how I will then handle it emotionally. Though I have tried to prepare myself for this moment for months- talking myself through the possible problems and potential solutions- for now I want to just live in the fantasy/ denial just a little bit longer: what if it's not as big of a deal as I thought? What if I won't trip on the slight elevation in the floor between the tile and our new hardwood floors? What if I actually will be able to carry a bag of groceries through the front door by myself without losing my balance?

Eventually, I will have to stop stalling, get off the computer and enter into my new life, but not because I want to. Mostly because I have no other choice. As anyone with HIBM can tell you, it's the initial feelings of loss and shock that come with navigating new territory that are the hardest, but eventually we find a way to adjust.

I am still amazed by how I can feel so extremely happy and grateful and blessed while simultaneously feeling so angry and sad and scared. How could I have looked forward to this day with as much passion as dread? How can I be so lucky to get to own a new home, be in love with my husband, have these two smiling little faces to wake up to and be surrounded by such wonderful family and friends AND have this nasty disease that continues to rear its ugly head in my most joyous moments?

I try not to question it.

I try to hold onto both extremes in one hand and try not to interfere with process that takes over in my mind and heart.

And most of all, I try to be in touch with the truth that some things are beyond the physical...

Just ask me.

A couple of days ago, I asked my four year old son if he wanted to come change his baby brother's diaper with me. As I slowly made my way over to the changing table, he ran (as he often does, because everything seems to be a competition these days) and arrived there first, stating, "I won Mommy! I'm faster than you. You're slow. You wear leg braces."

As I carefully placed the baby on the table, I was surprised by how little his statement bothered me. I didn't burst into tears. I didn't feel hurt. Nor did I feel angry. But why not?

Maybe because what he said was not a judgment, not a criticism, and not mean-spirited in any way. It was simply a descriptive, factual statement. He was merely commenting on what he has observed in his most innocent, untainted four-year old way.

It's been said plenty of times before- children bring a fresh, unfiltered honest perspective to our reality. They have not yet been influenced by the stigmas that seem to plague our culture and society. After I was diagnosed with HIBM, one of the many thoughts that kept recurring in my mind was the impact my disease would have on my future children and/ or on my relationship with them. I imagined angry outbursts on their behalf, "Why can't you just be like all the other moms?" Or sad moments, "I wish you could come ______ing with us (insert your favorite family fun sport- skiing, playing tennis, hiking). Or most devastating, "I'm embarrassed." Let's face it, kids don't like to be different. But where did that come from? Why is it that having a disability often provokes embarrassment, shame and a desire to hide? I should re-frame that. Why is it that I felt such feelings when I was diagnosed?

I suppose it's no surprise, for in my culture, disabilities, weaknesses, diseases and defects of any kind are considered taboo. But it's not just within the Persian community. Based on my personal experience, it seems quite pervasive. People are so uncomfortable around those of us who are different in this way. In the beginning, it took me a while to "come out." I went from keeping my HIBM diagnosis a secret from most to now wearing my AFO's (lower leg braces) out in public with a dress and sneakers for the world to see.

It continually surprises me how comfortable people are to stare at me or rather, to try not to stare at me, and yet how uncomfortable they are to ask me about my braces for example. There's a natural curiosity to their stares. And I get it. And that's okay. So just ask me. Ask me what they're for, how they work, what they feel like, etc. It's as if asking me about them or what's going on with me will somehow be upsetting to me or "make me feel bad" about it. But I am living it every day. It's already upsetting at times, whether we talk about it or not. It's when people don't ask, that it can feel hard. It can feel lonely. It feels as if it's too much for other people to hear, to take on. That's when it feels like it actually is a bad thing, something that shouldn't be discussed and something that I should try to hide.

Life can be difficult and challenging at times, but it doesn't have to be bad. We don't have to be afraid of the hard stuff. Sharing experiences and trying to understand what it's like to walk in someone else's shoes is what brings people closer and ultimately what fosters acceptance.

I happened to have been born with a certain genetic mutation that caused certain symptoms in my body. That's all. I have accepted that. I have made peace with it (or at least I try to most of the time). I wish that others could more easily accept it too. And not be afraid to look, to ask and to try to understand...

It's My Birthday

I have never blogged before. Maybe because it felt exhibitionistic or maybe because doing so presumes people will be interested in what I have to say. But recently, I have felt a need, an urgent and desperate need to express myself- to share what's going on with me and my body, to help people understand what it's like to live with a progressively debilitating disease and ultimately, to help raise awareness and call attention to this orphan disease. The truth is, hardly anyone even knows the name of this disease that I suffer with every day.

Five years ago I was diagnosed with a progressive neuromuscular disease called Hereditary Inclusion Body Myopathy. It is a very rare muscular dystrophy that typically strikes men and women in their 20s or 30s and then, according to all of the literature, leads to "severe incapacitation" within 10-15 years of onset. There is currently no treatment or cure. But there are labs in different parts of the world that are either very close to establishing one or simply waiting for funding to start human clinical trials on treatments already discovered.

I have not always felt comfortable talking or writing publicly about my condition. When I was first diagnosed, I was scared, embarrassed and ashamed. I did not tell anyone. I was having a hard enough time processing the information myself, let alone having the headspace to process other people's reactions to it. But after a couple years, once I had moved closer to acceptance, I gave a "coming out" speech at the Neuromuscular Disease Foundation fundraising gala in June of 2009 and I shared my private thoughts and fears about living with HIBM. As vulnerable as I felt going public about my life with this disease, it was equally liberating and therapeutic. I have given two more speeches since then. For me they have evolved into an opportunity to educate people about HIBM, to chip away at the stigma (especially in my community) of having a genetic disease, and to inspire people to spread the word and ultimately, be a part of a cure. For the last few years, the annual speech felt like enough for me, like it was as much of myself as I was willing to share for the cause. But now that I am farther along in my disease progression, the anticipatory anxiety and fear that I regularly feel make it hard to feel like anything is enough. It's becoming harder to find ways to cope with not knowing how much worse I am going to get and how long it will take. Because it never stops.

My hope is that if I keep up this blog, it can be yet another tool to help me process and cope, it can be a source of support for others struggling with the same or similar challenges, and it can help inspire people to join me in raising awareness and working toward a cure.

I am launching this blog on my birthday because for me (and I imagine for most people living with a progressive disease) birthdays have evolved into something very different from what they used to be. In the past, I looked forward to my birthday - a day to celebrate and be celebrated, a day that felt carefree, light and fun. I was never one to fret about getting older or to wish for anything beyond what I already had. But now, I almost dread my birthday. Mostly, it just feels like a painful reminder that I am getting one year closer to worse. Another year of new losses. Another year to look back and remember how much stronger I was on my last birthday. This is my second birthday wearing leg braces. And this is my first birthday that I am experiencing weakness in my right hand that makes it harder to write with a pen.

You see, it is not hard to fall into the deep dark vortex on my birthday, especially when I can painstakingly imagine all of the birthdays ahead of me and all of the losses I will have accumulated each year. What is hard, is to see beyond the darkness, to perceive my reality through different lenses. When I am able to do that, I can celebrate that this is my first birthday as a mother of two. On this day last year, I was convinced I was never going to be able to realize my dream of having a second child. This is another birthday I get to celebrate life with my husband, someone who always seems to make me feel like it's going to be okay. And, as my sister pointed out to me, this is another birthday I get to celebrate the fact that I can still walk, with or without leg braces.

That's the funny thing about life, we get to choose how we are going to frame it, how we're going to interpret it, what we're going to make of it and how we're going to celebrate it.