Often when someone we love gets a life changing diagnosis, it’s as though the diagnosis is all we can see about them from then on out. For example, we have had family and friends with Cancer, and even HIV, and something happens to our brains when we learn of their health condition and consider their daily life. It’s like, “Wow, you have cancer and work?” Or “You have HIV and you have hobbies?” Suddenly “How are you?” has a completely different meaning. It isn’t simply a question to inquire how one is at the moment, it carries much more depth, because what we really want to know is how does one live, exist, and sustain a life under the weight of a serious illness?
For most of us who have had to answer this question we give the wrong answer, because the answer to how I am isn’t necessarily based on how I am physically, which is what most people want to know. Physically I may be weak, but my heart and mind may be strong, therefore I am good. Or maybe physically I feel stronger than usual, but that doesn’t equate I am good. So much of a person and how they are is made up of more than the tiny details of their life – life can get discouraging at times for any of us. But, frankly, when living with a chronic illness, life becomes a daily boxing match, and it’s all we can do to just get back up and keep fighting for a full life. How we perceive how we are is, a) a choice in where to put our focus, and b) learning to live with limitations and adapt, and c) understanding that bad days come regardless of our attempt to control our thinking and environment, which must be accepted as simply that, a bad day. None of these are automatic or easy, but definitely a prerequisite if one wants to have any kind of life after disease.
In part, my diary of a disease is to write and blog about just that, how I am. When I’m honest about how I really am, it may make great writing material, but it also means it may be consuming my focus at the moment. In my experience in this body of mine, this disease is always active, I’ll always have something to write about, think about, and complain about. It is never silent. It never goes away. Symptoms only occasionally or slightly improve, though sometimes I think I just get used to them. But you know what? Often, I don’t want to talk about it. Because if I answered 100% honestly, 100% of the time, I’d be talking about myself way too much and sharing details I don’t always want to share. In other words, over the past couple of months while I’ve been answering “I’m good!”, within that “good” are trials and suffering in walking problems, heat problems, muscle stiffness problems, bladder problems, tremor problems, and spasticity problems that I simply don’t want to give attention to right now. I’d rather forget them and move on for the moment in a strength that doesn’t come from me, and when I do, I’m good.
It means so much to me when the people in my life care about me enough to inquire about my health in light of the progression of the disease. And although MS manages to seep into just about every part of my existence, I know it isn’t all of me, and I want that to shine throughout who I am too. I don’t want to spend every second thinking about how I feel physically, doctors’ appointments, fighting this stupid disease, getting treatments and tests, resting, looking for miracle cures, studying the latest medical breakthroughs. C’mon, just living is hard enough, and with the free time I have, after I’ve spent the majority of my time and energy doing everything much more slowly than I’d like to and stressing over all I can’t change, I want to enjoy my life. It’s a full-time job being me. I’m tired, I’m barely afloat some days, and frankly, I don’t have time for MS and its attempt to gain all my attention. So the answer to that age-old question of how I am doing is easy, I’m good.