Reposted from my other blog from October 14, 2009. This was during the beginning flares that eventually led into several flares in 2010, getting worse at the beginning of 2011. A Twitter friend of mine brought it to mind, and after sharing it with her, I thought I should share it here as well. The original post (and comments) are here.
When I first got really sick, I worked through a lot of acceptance. Asking for a handicap hanger, then actually getting it from the DMV, was hard. I was officially labeling myself as handicapped.
Getting the cane was equally fraught. It had not been suggested by the doctor. It was my idea. It was a good idea, but still, it would change my illness from one no one could see to one everyone would see – and might ask about.It was strange, but helpful, to have this thing I used to get around in the outside world. It reduced the pain, eased the tiredness, and labeled me, in my eyes and, I imagined, in the eyes of others, as a sick person.I was really sick. And I had accepted that it wasn’t going to change any time soon, if ever.
Then, years later when I finally got to put it away, it was a celebration. I was mobile on my own again, without exhaustion. It was exciting to not h
ave to use it. And a heartbreak when I had to take it out again.
I haven’t touched my cane in more then two years. In the time since it became less a symbol of being sick and more a symbol of what I survived.
I haven’t had a real lasting flare in a long time. And not one that incorporate the unpleasant leg pain I had when I was really sick.
Now, I’m hurting.
Enough that it’s not always pleasant to walk. Not so much that I can’t walk, but enough that I recognize that my weekend plans will lead to exhaustion if I don’t have some sort of plan to handle the pain that’s likely to come with it.
So two things came of this realization:
- I needed to let the people I would be spending time with know what is going on with me, what my limitations are, and that I don’t need or want coddled – just patience.
- The best way to limit my exhaustion from moving around will be to use my cane.
First off, I’m not ashamed or afraid of my illness. I feel like I have a responsibility to educate people about invisible illness and disability, to show that it doesn’t have to change me or my relationships. I am proud of the advocacy work I’ve done for myself and others who suffer as I have.
That said, it’s still scary to sit down and say to a friend, “Look, I’m flaring. I still want to hang out, but here’s what may be happening with me.” But I did it – and my friend was awesome about it.
Next, for me to be able to pick up my cane and not see my self as “broken” I was going to have to let go of the symbolism it had.
My friends, let me tell you, this is a hard thing to do.
This piece of Lucite and metal has been many, many places with me. Airports, bars, doctors offices, mini-golfing – I even scored a hole in one using it as a club, it got someone bumped from a flight out of Vegas, it’s pulled juice from high shelves and I once, to my shame and amusement, shook it like an old lady at my then-husband in frustration. If this cane could talk, oh the stories it could tell.
All of those things are wrapped up in the story of my illness, the story of my survival, and the story of my brokenness.
Yet, today I realized something:
I am not broken and using the cane doesn’t change that.
That is so deeply important, that I’m gonna repeat it:
Just because I am ill, it does not mean I am broken.
I am not broken. I am just me. I happen to have an illness, but it doesn’t define who I am or what I am doing with my life. And I most certainly am no longer afraid of it. I know how to cope with it, handle it, and coax my body and brain through a flare with more ease and comfort then I did years ago.
My cane, the post-it notes, the quick list of how I may be different is easy to give out. I can explain it with ease, tell you what’s wrong, pick up my cane and keep on going.
Because I am not broken and I have nothing to be ashamed of.
My auto-immune disorder, my fibromyalgia, my Vitamin D deficiency are not shameful things. They are simply a part of who I am, and I deal with them like I deal with other challenges: calmly, clearly and to the best of my ability.
So this weekend, I will pick up my cane as I walk out the door to meet friends, grab dinner and go shopping, and then go to a friend’s show. I will take it with me easily on Saturday to an outdoor craft show, a meeting and a date.
And if anyone asks, I’ll just tell them I needed a little help, I’m okay and this will pass.
My cane is no longer a symbol of my brokenness. It is simply a tool I can use. A tool at my disposal to ease the pain and the exhaustion and there is absolutely no reason not to use it.