It’s been about a year since my first post on this blog. I thought it would be a good time to reflect on the journey I’ve been on this past year.
When I wrote my first blog post a year ago, I’d just started physical therapy. At that time I was really hoping that physical therapy would help me to recapture some functional capacity. I was limited to a maximum of 3-4 hours of activity per day. The rest of the time I had to be laying down either on my bed or on the couch and I was in quite a bit of pain. I rather optimistically hoped I’d be able to return to work by the end of the year. But when I was hitting the six month mark with physical therapy, I realized that an increase of functional capacity had not been a realistic goal for me. Don’t get me wrong, I’d seen huge improvements due to physical therapy. I was physically much stronger so doing basic functional tasks like brushing my teeth, taking a shower, changing my sheets or taking out the trash became MUCH easier to perform. I was able to sit upright rather than needing to lie down all the time. I also noticed improvement in my mood and in the quality of my sleep. But the improved functioning came at a cost – increased physical activity meant increased pain. Between the pain and the realization that my disability was most likely going to permanent a huge depression came over me as the weather turned and the days became shorter in October. I began to question whether life was worth living if I was only living it in this limited way. It’s been several years since I’ve seen most of my friends face to face. I’m housebound, so it’s difficult for me to make new in real life friends. Dating seems impossible. And then there’s the guilt, the feeling that I am this enormous financial burden on my parents. None of these things felt good to me. It felt like I was in mourning for my life. Between my cognitive symptoms and my physical symptoms, I was experiencing a debilitation that most people don’t expect to experience until they are elderly. The years stretched out before me and I didn’t really know what there was to live for. I’m unmarried, physically unable to care for children or work. I experience a cognitive impairment that makes tasks that used to come easily to me, such as reading and writing, more challenging. It was very far from the life I was expecting to live. When I realized that my depression had become serious and life-endangering, I reached out. To my parents, my friends, my neighbors, my online community, to my medical provider. And everyone really stepped up to the plate. My neighbor took me to see my primary (because I’m in Medicare, my primary is a physician’s assistant rather than a doctor) and stayed with me until my parents arrived. My parents dropped everything to drive six hours north to be with me (and came to visit me every few weeks during the winter to keep me company). I was surrounded with love and support from my friends. Still, it was a difficult time. I had to learn how to accept living life as a disabled person and that wasn’t necessarily an easy thing to do. I had to find a way to live a meaningful life within not only physical limitations but also with constant discomfort in some form or another.
In order to come to terms with my new reality, my “new” life as a disabled person (although I have been disabled now for six years, it was only this past year that I’ve accepted that this status is most likely permanent), I’ve had to restructure my ideas of what constituted a meaningful life. For example, the biggest thing I’ve missed the last few years was having a social life. Being able to interact with people. But luckily we live in an internet age. In the last year, I’ve grown dependent on social media and they have provided me with a daily source of interaction. I have made new friends on Twitter across all walks of life with whom I’ve been able to have Skype conversations – which have replaced one-on-one interactions such as meals together or coffee dates. Because such a wide variety of people interact on Twitter, I’ve made friends all over the world, many of whom are disabled like me. My interactions with these people have provided stimulating, intelligent conversation that has expanded my horizons, my vocabulary and my understanding of the world I live in. There is a diversity on Twitter that I’ve never encountered in real life, I find the richness of my interactions fascinating and thought-provoking. I’ve even been able to meet a couple of my tweeps due to my participation in this year’s AWP conference in Seattle.
Learning to live life in acceptance has led to a new serenity and patience in my relationships with my family and friends. I’ve learned to stop fighting against “what is” whether it’s my disability, my geographic location (hundreds of miles away from my friends and family), or personality characteristics of my parents, I’ve learned to let go of my frustration with “what is” and simply accept it and that has led to a deepening of my relationships, a greater sense of centeredness and peace, and a greater sense of what’s possible in the world, and a curiosity about what I will get to experience. Just because my life is limited doesn’t mean it can’t be stimulating, interesting, or surprising. I have a new hope and excitement about what’s ahead for me, and a belief that some of what’s to come is going to be amazing.