My life's great, right?

My best friend and I have been saying for years, “Somebody’s got it worse” to make us feel better when things are crappy. What about the poor person who can’t say that? A few years ago I read an article about a woman who as a child grabbed an electrical box near her house and blew off both arms and both legs! Dear god! She went on to marry and have a couple kids. So, on days I feel especially down I wave my arms around and kick my good leg and say “at least I have arms and legs!”

It’s so easy to appreciate the good in my life-theoretically. I know I have a great support system. Good friends, a supportive family, great medical care, blah, blah, blah. But it’s easier to dwell on the negative. For example, “Really God, you let Paris Hilton who does nothing productive with her life, be healthy? And I, who wanted nothing more than to do for the world am stricken down with a crippling disease? Let me explain. I’m not a religious person but I think doing good for the environment and other people is keeping in line with what “God” wants. I haven’t tithed to a church in years, but up until I stopped working, I regularly donated to various environmental and social groups. Never enough to get the tote bag, tee- shirt or mug, but enough to help without the overhead. Nature is where I feel a higher power, so that is my church.

That was back when I had the luxury of being idealistic. I didn’t use paper towels for years. From about age16 until 30, when it got to hard to keep washing the rags I used instead. My son’s bottom rarely felt a disposable diaper. Yes, I used a diaper service, but still. Being idealistic is a luxury. Do it fully and be as obnoxious about it as you want, because one day you may not be able to. I appease my guilt by recognizing that when I was able I left a relatively small footprint on Mother Earth.

Back to the woman with no arms and legs. She’d probably know who I’m talking about if she read this. And she was the ‘don’t feel sorry for me’ type. She drives, with her feet and bathed her kids as babies, in the sink, like all us moms have- with her feet! And she drove with her feet! It’s been a while since I read about her, but I bet she still is.

Okay, overachievers of the world, stop giving the rest of us a bad name! Fuck bootstraps!

In the grand scheme of things I have it pretty good. Take a few seconds and let the atrocities of the world wash over you so I don’t have to expound. When I’m feeling blue I can lie in my bed and watch my Tivo, so I don’t . At some point if I’m not up to feeding myself, my ma, my kids or my boyfriend will bring me food in my room. Considering that I have to be crippled, I have a pretty good life.

But so many people have it better. One of my pet peeves is a really overweight person with no health problems. Stop eating. I don’t mean a few extra pounds. You know who I’m talking about. And if it’s you and you can walk, either be happy with yourself or walk it off!

That is where “life’s not fair” comes in. Roll with the punches, blah, blah, blah. Make the best of what you are given. I think that while I do think I get more than my share of hurdles, the universe gave me a healthy dose of being able to laugh at myself. That is worth more than being a bit healthier with no sense of humor. I don’t know how I would make it otherwise.

I have laughed my way through horrible situations. And I always use my handicap to my advantage when I can. Oh, yeah, free parking at Graceland. Sally Mae forgave all my student loans (30 k-ish) because I‘m “permanently” disabled. The MS society of Wisconsin paid my huge gas bill and bought me adaptive pedals for my recumbent bike last year. I also got a scooter a few years ago that Medicare paid for. It’s too bulky to put in my car, but it’s made many trips to the park, to get kids from school, and to go tooling around the neighborhood. I’ve had a lot of fun times on that thing. My only regret is I don’t have someone videotaping me all the time. Keep watching for “Adventures on a Scooter”.

Say what you will about the government dropping the ball with health care. Apparently if you’re poor enough and sick enough, they’ll take pretty good care of you. There are a few programs I should be eligible for, but I’m too young to qualify. Really? I’m too young to be crippled? I hadn’t noticed.

But, on the bright side, I am the most spoiled cripple around. So really, like I said I’ve got it pretty great. Not Montel Williams great but so great that when I’m down I have friends who let me vent while sitting on their own problems and always act like mine are “worse”, when really, a problem’s a problem. I even have someone who stops by to drop off a 12-pack when I’m alone and broke. That’s a friend!

My therapist thinks I do such a great job coping. I told her that she doesn’t see me when I’m having a bad time. She said she knows that because I don’t make it to my appointments those days. Aah, grasshopper. I’m going to go have a glass of wine and some aged cheddar cheese. (Note; spoiled)

Saga of a Woman

Fall 2001, shortly before my big brother died from MS (Multiple Sclerosis) - induced complications, I was diagnosed with the same. I had started having symptoms like left side weakness and vertigo that spring, but I was too busy being a Public Ally and a mom to sweat getting it checked out.

Let me digress. Public Allies is an AmeriCorps program that prepares young people for a career in community service. Allies are placed in a local non- profit for 10 months and have leadership, diversity, etc. trainings. President Obama and the first lady were very involved with the Chicago chapter.

It was actually on one of our retreats that I really started to worry. We had a nighttime hike in the snow with lanterns. I couldn’t keep my balance, couldn’t hold on to my lantern, couldn’t keep up with the group. It was the hardest hike I’ve ever been on and I hiked to a mountain summit in Colorado! It was also the hike I’m most grateful I went on.

By the time I made it to the neurologist I’d already confirmed the diagnosis in my mind. I sat down in his office and actually said, “I have MS, do whatever tests you need to do to prove it. When the doctor confirmed it, the next week, I bought a plant and got a tattoo. When I got the MRI films back, my friend Megan came over and we drank wine and laughed at how crazy and alien-like my brain and its lesions looked.

I’ve been progressing slowly but surely. My left side is f#kd. My leg is numb, stiff and weak. The only way I can walk at all is with a cane I call Levi and I swing my leg around instead of lifting it. I can’t wiggle my toes or step over anything on the floor. My son, bless his soul, jokes about how ANYTHING on the floor completely foils me.

Sometimes, sadly, more and more often, I use a wheelchair. My doctor had been writing orders for wheelchairs for a couple years and I would never fill them because I knew if I had it I’d use it. Unfortunately, surgery (I’m the Bionic woman), a subdural hematoma, and an exacerbation kept me off my feet long enough that when I first got to in- patient rehab I had to practice standing! For the love of God, standing.

So I left Froedtert with a wheelchair. It sucks as much as I expected. I can’t volunteer much at my daughter’s school because her class is on the 3rd floor and there are no elevators. When I use it in the house I smash my hands in doorways. And few places are handicap accessible. I got stuck in an “accessible” bathroom stall a few weeks ago. The nice woman that came to my rescue had to lift the chair over the toilet because I had to pull it further in so I could close the door. I’ll admit it was fun to hold Scrappy’s leash and have him run down the street pulling me (it was late so no traffic).

I’m going to be getting a power chair. Wooo! I’m too damn young for a power chair, right? Another really fun thing about being crippled is I have gained a ton of weight from inactivity. So I have an appointment at the Phat Clinic next month. The “ph” is just to make me feel better. I can’t wait to see how I lose weight without exercise. Ta-Ta!