Monday, June 27, 2016

The Perspective of Hope

I know a woman whose fourteen-year-old son is dying of cancer. He was diagnosed at age eleven and has fought an insane battle, but isn't winning the final round. Of course it goes without saying that the impact on the entire family has been utterly devastating. His mother is a gifted writer who provides incredible insight into the reality of their nightmare, and she recently wrote a post that utterly moved me. It was about the changing stages of hope. Four of them, to be precise, coinciding with the advancement of her son's cancer. It started with the natural hope that a person so young would beat the disease and sail into adulthood to live a full and rewarding life. But by the time she reached the fourth stage, it was all about hope for courage. More precisely, the courage to watch her child die.

Needless to say I was incredibly humbled. And ashamed. See the last six months have been living hell for me. I got really sick again and had to quit my job. I didn't realize how sick I actually was, however, until I quit that job and tried to resume my normal housewifely duties. That's when I fell flat on my face. I went through my own grieving process, which mostly consisted of anger and hating myself for being so sick it totally screwed up my life. When I was at my worst I even prayed for my own death, and raged at God for sparing my life when I had those two strokes six years ago. It would have been such a natural way to go, and would have saved me years of suffering...

I bet my friend's son would rather live every day of his life as a double-stroke, four-pancreas-attack, CFS/ME, and fibromyalgia survivor than die in his early teens of cancer. While I don't subscribe to the belief that someone else's problems invalidate mine, reading his mom's post was an incredible dose of perspective. I've been given the gift of life. A sick life, a life with a lot of concessions and heartache and sacrifices and surprises. A misunderstood life outsiders judge very harshly. And a life that really flippin' hurts. But the thing about life is it's not final. It's fluid and can change. If observing this family's experience has taught me anything, it's what a fool I was to wish away my life. For no matter what depths of despair I may sink to, there are probably quite a few people out there who would gladly take my living hell.

Thanks for joining,


  1. It takes a good deal of empathy to understand this. I still feel, at times, that I'd rather just go than try to navigate life, with all of the judgement and alienation that comes with invisible disease. It may be shameful, but it's true. I continue to be hospitalized, total bed rest at doctors orders, experience strange infections, etc. I literally never know what the day will bring, the E.R., another ruined tendon, or an infection that I got from getting into someone's car. And the worst part is the constant threat of the one medication that allows me to get up in the morning with a silver of hope being taken away from me.

  2. Thank you for sharing their story. As bad as things may be for us, there is always someone who would swap life difficulties with us because their's are so much worse.

  3. Hi Leah,

    Thanks for telling your story. I absolutely hate my disease and everyday used to be a struggle to get out of bed. I've tried everything I could find and it all came down to diet and yoga for me. I haven't beaten or cured my fibromyalgia but I keep it subdued and it's a daily battle and now I found the tools in one book here is the website: . Sure I'm not cured but now I live my day the way I want to. Hope this helps some of you.

  4. Leah, this touched me deeply, as it is so true. I have FMS and when the pain hits again I always remind myself I'm happy to have FMS and not cancer, or MS, or ALS, or what have you. I will live, with ups and downs. If I maintain my regime of healthy (gluten free) diet and exercise (yoga and fitness), I can do okay, even if I'm not as strong and energetic as I was. I try to be grateful for all that I have, and not dwell too long on what I have lost. I think this is the only way for anyone with chronic illness, as hard as it is.
    We will live!