MS & Love

I’ve been thinking a lot lately about a subject Montel Williams wrote about in “Climbing Higher” – relationships.  

One section on pages 147-148, strikes a nerve (bad cliché to use in a blog of this nature? (grin)):

“People with MS need to make a huge effort to bring people into our world.  We tell people what’s wrong only when we feel like telling them, and then we stop.  It becomes this dance of double-talk rather than just trying to tell the truth.  I think more marriages would be preserved if people were 100 percent open about the disease from the beginning, rather than taking months to get to the same point, after the damage has already been done.  Otherwise, the spouse feels left out, like you’re closing up and you’re pushing them away.  It’s part of the reason a lot of people with MS end up divorced.  If you are in a relationship where you are used to sharing your emotions and all of a sudden you get this disease and you shut down, you are taking something away from your spouse.  And your spouse is going to notice, and naturally feel rejected.

“I did this with Grace.  I’ve done something of the same thing with other women, sharing just so much and no more.  I’ve told them I have MS and what it is, but that doesn’t truly explain it.  How can you tell someone you’re just getting to know that she may one day find you jumping away from her when the pain comes on?  You can’t.  So you stay quiet, hoping it won’t happen.  And when it does, it scares them.  That’s why so many people who have MS end up alone.  We are so afraid to tell the truth to those people around us because of the fear of rejection.  All you need is one person to reject you and that can set the course for the rest of your life.”

This was written several years ago, and Mr. Williams is happy in a great relationship right now.  Yay!  I'm glad he's still fighting MS and sharing life with someone he loves!

Reading this section of his book did start up my brain gears, though.  The other day, I chose to launder the bedding and make the bed by myself.  Wrestling on the mattress cover and sheets seems to really heat up my body, for some reason.  But, I decided to tackle the task alone rather than call for hubby’s help as I usually do.  Vertigo tends to hit first when my core temp raises, and that’s what happened this time.  After some rest, normalcy returned...whatever that decides to be for us, eh? 

When hubby found out I’d done it alone, he asked why I hadn’t requested help.  I didn’t have an answer.  What is my answer?  Stubborn independence struck again?  Dad used to say, “Independence is great, but sometimes you are too independent.  You should let others do things for you once in a while.” 

Independence is part of it.  But, I suspect another part is that I’m still not ready to admit that help is needed.  It sounds the same, doesn’t it?  “I can do it myself” is a statement born out of stubborn independence (and probably pride is in there, too).  “I should be able to do this myself like I have umpteen-zillion times in my life before now” has a different tone and intent to it, and that’s the kind of bed-making attitude I took that day.  “Crikey, my body should be able to handle this task!” [Yes, I’m a Red Dwarf fan!]

I look at my cousin.  She has ALS.  She is on a ventilator.  She communicates with her eyes -- in person, via texting, and in email.  [I'm thankful for Tobii equipment which allows that.]  Everything else is done for her.  She can only move her eyes and one toe.  It is so hard to see this beautiful, adventurous, loving person go through this.  Yes, I feel fortunate in comparison.  I count my blessings.  When I tackle a task that is starting to wear on me, I find that I’m saying to myself, “She can’t do this anymore. You can! Suck it up!”

I cannot help thinking of the man who caused me to be such an advocate for those with MS, to start researching, to fight to raise awareness, to work to gain funds for those striving to find a cure.  When I was tentatively told I might have early MS back in the 1990s, I joined an online support group.  A man there had an aggressive version where he was losing abilities quite rapidly.  He said he was going to end his own life soon, before he lost the ability to do so without assistance.  Most tried to convince him to be hopeful, but he said his “goodbyes” and disappeared from the group a few days later.  

It caused everyone in the group to assess the likelihood of their having to face the same sort of situation someday.  We didn’t know about there being different kinds of MS, so we all thought we’d be in his situation at some future date.  Some would get there more slowly than others, sure; but we all thought we’d end up in a state like my cousin endures.

Therefore, with the symptoms going away like they did for me, it was easy to think the bad episodes were just a fluke – something other than MS.  Even after the flare-up 10 years ago, it was easy to think that perhaps it was permanent nerve damage via beriberi.  That meant it wouldn’t get worse.  The nerves were damaged, but I could live with what I was already experiencing.  Nothing more would be added to the list of symptoms.  Then, the flare-up of 2012 struck with an addition to the list – vertigo.

No, not the movie.  (smile)

I look back at all this history with hubby included in the timeline.   I get to thinking: “What have I gotten him into?  What’s ahead for us?”  Mix that line of thinking with my not telling him every issue like he’d like and not asking for his help.  Well, I’ve been withdrawing like Mr. Williams describes.  I’ve been doing it physically, mentally, and emotionally.  I’m reluctant to take my best beloved on this same ride with me.  What if this gets worse?  What if it gets much worse?  I could handle this when it was just me, but now I'm dragging him along, too.  What if this turns into a nightmare like it did for that man in our online support group or like it did for Annette?  What if I end up like my cousin?

That’s a lot of “what if’s” to muck through.  And, this is why I need to sometimes distance myself from the research, from thinking about MS, from reading about and watching the sadder MS stories.  Sometimes, I just need to run to my Heavenly Father, crawl into His lap via prayer, and let Him bring in His Light and hope so that His daughter can come back and be a positive force in the world again.  Then, I can look over at hubby, smile, and say, “You’re helping next time, Buster!...and, thank you.”  

There’s hope.  My focus remains there – for his sake, for mine, and for you all!  I honestly believe humanity is on the brink of figuring out how to cure MS, ALS, Parkinson’s, and many other diseases.  We’re getting there quickly.  Hang in there!

From "Vertigo."  Yes, the movie.  :)