All posts for the month January, 2010

So today, I’m at my neurologist for my once every 8 week steroid treatment.  I walked into the infusion room at the same time as an older woman, maybe in mid to late 40s.  I walk in as I do most places, joking around and being goofy. 

As I walk in, with her and her husband behind me, I come in with authority and say, “We are here on our field trip.”  The nurses laugh, and the older woman is a bit taken back.  After all, I could tell, she is deathly afraid.  I precede to sit down, and as I am getting prepped for my IV, she begins to talk to the lady next to me of the procedure, and starts going over her ‘scripts and everything else.

I’m now intrigued. Her doctor suspects she “may” have M.S.

I begin to introduce myself, and ask what her MRIs looked like.  Brain was clean, but one spot on her spine.  Her doc wants to give her a full spine MRI or a spinal tap to confirm.  I tell her my story, and how my preliminary MRI were riddled with plaques/legions.

She is afraid.  I remember how I was when I first was diagnosed.  I wanted to soothe her thoughts, calm her down a bit.  So I did.  I explained what she may feel from the steroids, the side effects I have from them, and the overall positive things she wanted to hear.  She asked my opinions, and truly wanted me to share my thoughts and what happened to me in the beginning.  I obliged, and told her my whole story.  The double vision, the runarounds from different doctors and ER visits, the treatment 1 week before my wedding so I could see while on the alter.  Then the official diagnosis on October 27th, 2004.  My life changed.  We continued to talk, most about where she is from (ironically it was Westland).

Her drip was a longer and higher dose than mine, so I was getting unplugged.  I told her, “Keep your head high, even if it is M.S., its treatable and you can still live a normal life.”  I brought a ton of candy (steroid IV give you a rank taste in the mouth) and gave some to her, and the rest to the nurses to put in their “candy bowl”. 

As I put my put my coat on, she and her husband thanked me for my “kind words”.  I looked at her and them both and said, “Even if it is M.S., it just teaches you to live and love every day of your life, and you can become a better person for it.   Good luck with everything.”

As I walked down the hall, I realized she will never forget me.  I can’t remember where I put my shoes the day before, but I vividly remember that first I.V.  and the people I talked to who helped me through that hour of treatment. 

From the 20+ year old businessman who still still hikes and plays sports and does everything he used to and is treating his M.S. by taking Avonex and Tysabri (he was in the stage III trial), to the older 45 year old man who has had symptoms for 15 years before he got help, in which it was too late, but now takes chemo and can button his jeans again. 

I tell people all the time…Life is nothing but a series of rooms, and who we are in those rooms with make up the stories of our lives.  Don’t get stuck in the waiting room, make sure those rooms meaningful.

It’s hard for her, I know this and tell her I understand.  Last night, we went out, and I very much enjoyed her company.  She didn’t quite feel that way this morning, as she told me with tears.  I know all this is hard on her, but she has to understand it is so much harder for me, having to watch her crumble day after day when I am supposed to be giving her the support she needs.

I’m trying.

Worst part is, she has control over this, I just have to sit back and watch.  Do I give her space she wants?  Do I separate like she asked before?  Do I just put my ring on the table and tell her to stop hurting?  I don’t know what I’m supposed to do, or even how to manage this in the meantime. 

I need to be strong for her.  For me.  I don’t know if I have another choice. 

Why is true love so difficult to obtain?  Maybe you think you have it, but if it’s one sided, is it really true?  Is it possible to make someone love you and stay by your side for better or worse?  After all, isn’t that what the papers say? 

I don’t know why this is happening to me.  Where did I go wrong?  Did I do wrong?  Building a good family has been a dream for me.  I love kids.  I love loving another person as much as I do.  Why can’t I make it real?  Can I?  I have gone through so much, don’t I deserve happiness?  What about me in all this?

Maybe it’s my disease.  That’s just one more burden she doesn’t want to deal with.  I don’t like being a burden on anyone.  I don’t want to be carried around anymore.  I need to change.  I need to love me first before she can really love me.  I’m not happy with my past flaws, and I’m praying they stay as “past flaws”. 

Who knows, it’s probably too late already.  I’m never going to find any one else as special as she.  I have to be prepared to live my life alone.  It’s not something I want, but I can’t make someone stay.  I hope she figures it all out, and I hope it’s in my favor.  I just don’t think it is.  I’m sure all he has to say is the words that he will care for her and her kids, and she is gone.  Just like that.  Everything ends.  Sad thing is that it’s not in my control.

For unspoken reasons, I no longer root for the Indianapolis Colts.