Tuesday, September 14, 2010

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.


  1. Well...slightly off-topic BUT some of us couldn't afford to win such a contest. Like me. Trying to pay the taxes on a "dream vacation" would bankrupt me.

    I'd have to decline such a prize. That in turn would sent me to psychotherapy for years....because I didn't get to go on a dream vacation I wasn't planning to go on. Know what I mean? LOL.

  2. Another downside I didn't think of! Thanks for pointing it out, Have Myelin!

  3. Hello: The MS & death question is hard to face. My understanding is that the more progressive forms can lead to premature deaths. While not directly from MS, that is lung infections, kidney infections, that resulted from nonfunctioning body parts such as swallowing and bladder function. When I was 38, I was told that I have progressive MS and could expect 10 to 15 years. While hard to hear, I am grateful for the neurologist being honest with me. Knowing this has pushed me to live the fullest life possible with the time I am given. No, I don't know for sure, one could get hit by a bus any day. The difference is, I got a letter from the bus company telling me they would hit me some day. For most folks MS isn't a killer-just those with the less pleasant forms.
    My wish wouldn't be for a trip-but money for the equipment and ADA Adaptions we can't afford.

  4. I can only imagine how difficult that conversation must have been, Janine, regardless of your response. Primary Progressive MS and Secondary Progressive MS are definitely harder pills to swallow than my form of Relapsing and Remitting MS with most of my symptom and issues related to my optic nerves. I keep thinking, though, of how AIDS/HIV used ot be considered a death sentence even 10 years ago and now with medication and treatment, the disease has basically been relegated to the status of a chronic illness for the majority of folks who live in developed countries and have the luxury of modern health care. There is ALWAYS HOPE. Always. I think we should all live each day to the fullest if only because this day will be part of a very long and full life. This is not to be confused with the Pollyanna--all will be well, no big deal, minimizing of a diagnosis. I just try to live in the second line of the Serenity Prayer and "change the thins I can."
    Lazy Julie

  5. Julie, I am with you. I have RRMS and the more mild form. I too, see my MS as more of a blessing than a curse! While sometimes I get frustrated because I will never be what I was before being diagnosed. I am grateful for all of the things I am better at now that I have been diagnosed. I am a better listener, a more patient mother, a more loving wife, I seek humor as therapy and love to laugh until my belly aches, I am more apt to take advantage of a good day and accomplish something I normally may not feel up to...like going for a bike ride with my seven year old...I will savor every moment of it...verses thinking about all the chores left undone, I appriciate life and feeling well and more than anything I appriciate that the cards I have been dealt...could have been a lot worse!

  6. I like your attitude. I feel much the same. I am not saying that MS isn't a nasty, crappy disease, but a positive attitude can make a world of difference on how well we live with it.

  7. Julie

    This post has inspired me so much to embrace what I have.

    Thank you