I Pity the Fool Who Pities Me!

I just found out about a Make A Wish type program for people with MS.  Did I miss something? Did the four neurologists I've seen since I was diagnosed with Multiple Sclerosis forget to tell me that I'm dying?  Did I somehow, in my three years of research about my disease, miss the part about it being fatal?

So, why in the world would the fact that I have MS qualify me for a free vacation?  I am many things but I am not pitiable.  If you want to send me on a vacation because I'm clever or otherwise worthy...awesome...but because I have MS???!!!! . I think it's cool that they are also offering power wheelchairs but the vacation piece baffles and offends me.

Maybe I'm missing the boat--literally as well, as figuratively. Maybe I should jump on any opportunity to capitalize on my status as a person with a diagnosed, incurable (so far), chronic illness. Naaaaaaa.  Call me crazy, but I think it's more important to change perceptions. It's programs like this one that inspire others to give me the head tilt, arm squeeze, and puppy dog, teary-eyed reaction I love so much when they find out I have MS. I'd rather save my own money or have a stay-cation than perpetuate the belief that an MS diagnosis is as sad or tragic as a child with leukemia. That is tragic. That is sad.  MS is not. It simply is what it is. It sucks sometimes, and some of us are or will be disabled by the disease, but we are not dying.  But wait...let me speak for myself. I am not dying. I am not dying of MS and, actually, I don't even plan to die with MS.

I consider myself fortunate. I was not diagnosed with stage four ovarian cancer. I would guess that if I was, I would be thrilled to learn that all I had to do to stay alive would be to give myself a shot every day and pay attention to things like nutrition, stress, sleep, etc. that are things everyone should pay attention to anyway.

No one wants MS. But you know what? If we all put our problems into the center of the room and were magically allowed to really see what it was like to live with everybody's various stuff before taking something back out, I bet we'd all end up taking our own crap home with us.

MS has changed me and my whole life, but it's not all bad. In fact, most of it is really, really good. Yes, you heard me say it...again. I get grief from others with MS every time I say that but it doesn't make it any less true for me. Some people tell me that I'm just one of the rare, lucky ones and that I do not know what their pain is like. That may be true. AND...I do know what it's like to lose the vision in one eye due to MS-related vision issues and the resulting optic nerve damage. I know what it's like to have my vision deteriorate to the point when I can no longer drive and sometimes have trouble picking out my own children in a crowd. I know what it's like to experience fatigue. I know how scary it can be to experience a new, temporary symptom like numb feet and not know whether it's the start of something permanent. I know how scary it can be to go into the neurologist's office to get the results of my latest MRI series, not knowing whether or not the shots I hate giving myself so much every single day are working and stopping the progression of the disease. In other words, I have just as much right to my feelings as anyone. I qualify. I've paid my dues. I have MS. And for me, it's a blessing wrapped in a crap-encrusted curse.

I've learned how to take care of myself in a way that I never did or would have otherwise.  I've learned how to prioritize. I've accepted that rest is a perfectly valid activity. I realize that there are only 24 hours in a day and it is no longer my goal to stay busy for as many of those hours as humanly possible.  I've finally, finally, finally learned how to ask for help and accept it when it's offered. I've started to learn the importance of balance. Most days, I live in the present. Most days, I listen to the voice in my heart and tell myself the truth. I've learned to stick up for myself even when it's scary and people don't like it. I've learned how to bitch and whine and vent and then let it go and focus on all the wonderful things that the Universe brings me every single day. MS has made all of that possible for me.

I don't need a wish and I don't need a free, pity vacation. And just for today, I don't need a power wheelchair either but I hope that someone who does need one, gets a really snazzy one with a horn that plays I Will Survive.