I’ve already blogged quite a bit in various ways about my experience with disabling vestibular migraine (migraine that expresses itself as vertigo instead of headache…in my case it also involves cognitive impairment).
I was always an energetic person, and a hard worker. I was grounded for quite a while when the vertigo took over – a few months of the most acute expressions of it, but really I was still experiencing it intermittently until, say, early last year. I also discovered that the medication I was taking to keep it in check, was also impairing my mental processes slightly.
During these past few years, there have been other challenges. People and situations that haven’t been the easiest to deal with. Through it all I have truly done my best to do as much as I was able at the time. Sometimes that meant I was pretty high functioning. Sometimes that meant I was struggling. Sometimes it meant that others had no idea that I was struggling. Sometimes I didn’t even realize myself that I was struggling, until I looked back – because often when you’re in the middle of a struggle, all you can focus on in just moving forward in whatever way you can.
This summer I’ve really returned to myself more than I have been able to in years. I’ve been able to work my ass off, basically. I’ve gotten more done than I have in years – and it’s a good thing because my household really needs me to knock some home runs outta the park, for our financial survival.
I was just talking to my husband on the phone and I said “I’m just working so much, I’m so tired, I’m working so much.”
He said “You’re doing more than you’ve done in years.”
I said “I’m doing more than I’ve been able for years.”
And now…I’m just sitting here with this ball in my gut, and with tears that are confused, not about whether they exist but about whether they want to show themselves.
I don’t know why this three sentence exchange hit me so hard, but I thinking the closest way I can think of to describe it is that I am grieving for who I once was. Even as I am closer to her than I have been in years…I am still grieving her loss, even as I reclaim some of who I was.
Having a disability of any kind can profoundly change the way we see ourselves. I wish I could say that I was one of those really inspiring people who woke up every morning of the past four years thinking “Alright! I’m going to kick ass despite my disability and beat the odds!” or “Hey everybody, here’s something inspiring to mull over while I go out and conquer the world, one step at a time!” But I haven’t. I’ve been scared. That I would lapse back into disability. That I would never be able to provide for my family again. That we would be stuck with the challenges we face forever. That nothing I could do would make anything okay. That I would be mentally impaired again. That I would be physically helpless again. That I would never again be the bright, cheerful, energetic and effective person that I was, because she was gone – because I’ve never been back to 100%. That trying to recover her was futile. That I would descend into the depression and anger that sometimes take me over, and never come out again.
When I tried coming off of my medication to see if the migraine issue was gone…I discovered that it wasn’t. That I still needed to keep taking it. But…what it if stops working one day? My fears aren’t completely unfounded. Maybe they’re just coming back up because I actually do feel better – or more able to do the work that I wish to do – and I’m afraid of losing it again.
And maybe I’m just tired from working 7 days a week and being poor, still.
Talking to a friend the other day, she said something about how I was doing so much better. I responded that yes, it was true, but that it was difficult to even calculate how brutally my confidence had been undermined by that experience, and how deeply the fear of disability had planted itself in me. I’m still afraid. And I’m still amazed at how hard I have to work, every day, to get up, to keep rolling, to push past insecurities and fear, just to believe in myself, and believe in my ability to do, to be, to achieve, to affect. I feel like I drag big, heavy things around in side of me, and sometimes it even feels like swimming with something heavy, tied to my leg. I can work and work to swim and become a brilliant swimmer, but at what point does my leg become free? Do I ever get to climb onto the side of the pool and take a knife and cut the rope from around my leg? I know that it’s not realistic for me to believe that this will ever be the case. But…it’s not the disability that’s hampering me right now…it’s the fear. I can’t really control if the disability will pop up again…but can’t I just get rid of the fear? I used to think of myself as a resilient person…I think it was just that I hadn’t had any real problems.
How do I let it go? I want to burn it out of myself somehow, or make it into a paper plane and throw it as far as I can. I’ve embraced a certain type of belief. The kind where you drag your chains into the taxi with you and bring them to the opera premier, dammit. And you look fabulous, dammit. But what about unlocking the chains? Leaving them at home would be a nice start. Dissolving them completely would be even better.
I don’t want to carry them around forever. I’m going to keep working and I’m going to keep doing and I’m going to keep working to feel better and do better. But…I don’t know how to let go of this fear.