"What matters most is how well you walk through the fire" -- Charles Bukowski

Saturday, August 6, 2011

It does not matter how slow you go so long as you do not stop. — Wisdom of Confuscius

I’ve been thinking about this quote a lot lately and how important its message is to the chronically ill or in pain. What does it mean to “stop” when you have a chronic illness? And how does one accept having to slow down? Perhaps one of the most important subjects I will touch on…

How do we come to terms with having to slow down? How do we accept that we will have to sacrifice much of what we wish to hold on to?

It does not matter how slow you go…

I hear chronic pain and illness sufferers constantly talk about how they are greatly misunderstood by doctors, family, friends, even organizations that are supposed to advocate for those suffering. Their diagnoses are misunderstood or invalidated altogether, their pain and symptoms are misunderstood, their anatomy is misunderstood, the list goes on and on.

I don’t believe the majority of society (doctors, family, etc) realize that chronic pain and chronic illness ultimately means great sacrifice. Whether you have to sacrifice your job and financial stability, your social life, your passions, or even your already poor health, this sacrifice is possibly one of the most misunderstood and invalidated aspects of chronic illness. Our bodies are often a few steps behind our minds, and if we don’t slow down we may self destruct. So what do we do to slow down? We sacrifice, and usually with some resentment.

So how much have I slowed down? I left my freshman year of college three weeks before spring finals and had to give up all of the hard work I’d completed (and all of the straight A’s I’d earned that semester), and now I am taking online classes this Fall while recovering from major surgery. I am realizing that my lifelong dream of becoming a physician and going to medical school is not necessarily practical. Do I believe I would be one powerhouse physician? Absofuckinglutely. But do I believe medical school, intern year/residency and fellowship would cripple me physically? I have no doubt. Not a single doubt, and what kind of doctor would I be to my patients if I did not take care of myself and could not give 100% of my effort to my work each day? What kind of example would I be to my patients? That is not the life I want to have and not the doctor I have always wished to be.

Chronic illness has left me at a crossroads much earlier in life than expected. How slow am I going now? I’m moving, but barely. I measure how much energy each task or errand will take from me. Spontaneity usually costs me, but making plans is incredibly difficult when I do not know how I will feel even an hour from now. I am slowly but surely resigning myself to the fact that I will likely have to give up my dream and find a new one- specifically one that guarantees me insurance benefits as an individual with multiple preexisting medical conditions. I will be a year behind in university and classes, and although this is insignificant in the long run, at 20 years old this has substantial social and financial implications, let alone what living at home does to my mental state of being.

But slowing down has left me with a kind of gratitude I didn’t know before I got sick. I am grateful for the time I now spend noticing the little things. I find myself happier over tiny positive events that before I probably would not have noticed. I take more time to note the positive parts of my day and am a much more relaxed person than I was a few months ago. But I am a type A when it comes to my academics and career. I’ve always been able to persevere, always overly ambitious— a girl with big dreams and a drive to succeed in all aspects of my life. I work hard because I want to, not to impress anyone else, and my work ethic is a great source of personal pride for me. But now what? How does a type A transition to a type B personality? How do I adjust my type A tendencies to accommodate my body? I have started putting my ‘type A’ energy into productive outlets related to my chronic illness (writing a book, this blog, outreach in the community), but I have yet to fully accept that the life I envisioned myself living and goals I saw my self achieving may have to change.

So long as you do not stop…

I have been through so much, through physical and mental hell and back these past three years— at what point does one reach their breaking point? Is there one final breaking point? Or do breaking points come in different forms and multiple times over one’s lifetime? How slow must I go to appease my body against my normal-paced mental capacity until I reach that breaking point? At what point do I have the right to say “enough!” and really, does anyone have that luxury of saying stop with a chronic illness? Whether you look at it positively or negatively (or both), chronic illness is essentially a life sentence for most of us, so what does it mean to stop?

I thought I hit my breaking point in March when I lost the most important person in my life, and in that same 24 hours I left university and ended up in the the ER with abdominal bleeding and problems with my liver. Between realizing my health was much more critical than I thought and losing the person who I thought I would have to support me, I wasn’t sure I could go on. I had lost so much both physically and emotionally, but here I am a few months later and I feel like a different person. I found a strength in me I did not know I possessed and I realize that as low as I was, I came back with a sense of self I had never known before. I wonder, just how much lower could I possibly get? If that was not my breaking point, what is? What will be? Will I ever reach a breaking point?

It’s been nearly six years of undiagnosed pelvic pain, three years of chronic back pain and one year (although it is speculated I have had RA since I was five, but symptoms were  atypical until college) of intense autoimmune symptoms/pain, and I must say I’m a fighter. But what about 10 years from now? 20?

And what does “breaking point” even mean? Generally speaking, I am already physically exhausted to an extreme degree and often emotionally drained, so that is not my breaking point because that is a state of normalcy for the time being. Is a breaking point not being able to get out of bed? I already have days like that. Is a breaking point being depressed? I have days where I am depressed too, and medication that combat the depression and anxiety that comes as a side effect of the autoimmune cocktail I take, and a therapist to show me new coping skills when I feel it is necessary.

Is a breaking point giving up? How do you give up on a chronic illness? Suicide? It is a known and tragic fact that so many people suffering from chronic pain and illness take their lives each year as a last and seemingly only resort, but I have too strong a will to live and too many goals…so I cannot see this being a breaking point. Do some people not have breaking points? Are breaking points merely mental states in our lives we wish to avoid? And if that is the case, does this mean we have the ability to prevent ourselves from reaching certain breaking points? I strongly believe so.

If some of us are aware of our strength and ability to cognitively face our pain and illness without succumbing to breaking points, how can we, how can you, help others who may not know how to pick themselves up? How can you help someone who needs a hand to help pick them up, what can you teach them about themselves that you learned through strength, kindness, and through your own “breaking points” or lack thereof?

And that is exactly why I created this blog: a safe haven, an honest forum, a community of people sharing not just their stories, but their coping skills. Sharing stories is great. It is such a comfort to converse with people who understand and let me know that I am not alone in my suffering, but more importantly, it is invaluable to learn new coping skills. So I ask you to take a moment and send me your coping skills. What do you do on a bad day? What advice would you give to someone who feels like they are at the end of their rope? What would you say to someone who was newly diagnosed? What do you do to combat anxiety? Tell me, because I want to share with those who may be at a loss and need someone to reach out to them.

I ask you to take a moment and say a prayer if that is what you so believe in, or a positive thought, or just a moment to think about the so many chronic pain and illness sufferers who have already taken their lives or are thinking about doing so and remember that you do not have to make that decision, and anyone thinking along those lines can take charge of their illness and they do not have to stopthey are not alone.

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