Tuesday, August 19, 2014

Why is MS so "Invisible"??

My friend Elizabeth is about to take on the fight of her life. Breast Cancer. She is waiting on more results that will help determine the path she and the doctors take in her treatment. Yesterday, the news was not the best. She was hoping for "positive receptors" to help customize the chemo, but 2 of the 3 tests were negative. She doesn't meet with the oncologist until Thursday, so she is basically in waiting mode. We talked this past Saturday night about what is ahead of her. We laughed, we cried, and reassured each other that this is just a big bump in the road. One of the things we discussed was losing hair from the chemo. Elizabeth has beautiful hair. Really, it is always pretty, put together, (which is difficult when you live in Alabama and deal with the insane humidity), and she mostly wears it down because her sweet little girl loves it. One of the things about her cancer is that to others, it is invisible. Unless she tells you about it, you wouldn't have a clue that she has cancer. We talked about how it is just "hair" and that it will grow back. But you know what? Yes, it is just hair, but it really is so much more. Losing your hair is a constant reminder that you have cancer. Every time you look in the mirror, it is a reminder. Elizabeth will have to face the looks of others who will notice her hair is gone, and she will be reminded of the cancer. Losing her hair makes cancer UN-invisible-- to her children, to strangers, and to herself. I am not sure if I will ever make the comment- it is just hair- again.

This brings me to Multiple Sclerosis. While crying and venting to Josh about all of this, we had a very candid conversation on the invisibility of MS and how no one, not even me, will ever truly grasp what  he is going through and faces everyday. Don't get me wrong, I have read so much about MS that I feel I could give a public service announcement on it and correct doctors when they slip up. (Of course I would never do that- I teach business courses. I do not know more than the doctors!!) For Josh, his MS is mainly invisible to others. If he didn't tell people, they wouldn't have a clue. I have witnessed the shock on people's faces when I tell them he has MS. The invisibility of MS can be a pro, but oh man can it be a con. MS is really a witch with the letter b when it comes to messing with the head mentally. It is also cruel when it attacks the body and can be only be felt on the inside and not be seen on the outside. It is overwhelming at times, it messes with cognition at times, and sometimes worst of all, others don't know this and just don't get it- me included!! I pray everyday that I can understand more about this disease and be prepared for times when Josh needs me to just "get it" and see past the invisibility of his MS. I want others to not discount his MS just because he looks and feels great. I want others to respect that inside, everyday is a fight in someway. Whether it is an arguement or a full-out knock down drag-out, MS is a fight.

I struggle with invisibility of illness and disease being a good or bad thing. I don't know... I just don't know. My response to those who ask about Josh and his MS is that so far, MS has been kind to us. Sometimes, I don't know how to respond and this has been the best that I can think of. MS is a daily struggle. Sometimes it is noticeable and sometimes it is invisible. Is that good or bad? I just don't know...

If you are a prayerful person, please keep my sweet friend in your prayers. If you believe in good vibes and positive thoughts, by all means send them her way. For Josh and I? We are great. We have an amazing life. We just need to remain focused on what we are blessed with and use it for the good.

Happy rainy Tuesday from the great state of Alabama!

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