Hope or Reality?

It is Lynn’s belief that if he accepts that he has MS then he is allowing MS to “have” him. He says that he has seen enough people who we struggling along, maybe feeling bad, but still going along until they find out they have a serious condition.  Then as soon as they accept that they have cancer or heart disease or whatever, they give into it and no longer push through it. So what he tells people is that he was diagnosed with MS but that he refuses to accept that he has MS.

Though I understand what he’s saying, I don’t buy it myself.  I’m the type who wants to know as much as I can so I can take control of my options.  I want to choose what I do and when I do it. I want to plan for my future.  I’m a realist. I want to know, within reason, what to expect, good or bad.  I know that knowing can sometimes have a “self-fulfilling prophesy”  component to it but I think that knowing doesn’t mean you have to just accept that nothing can be done but instead it allows you to make intelligent decisions.

When we are expecting test results that may not be good, Lynn usually tells the doctor to tell me the details and he tells me to just take care of it because he doesn’t want to know.  I’ve found that’s not entirely true.  The reality is that he has to ease into the knowledge. He’s more like the person who s-l-o-w-l-y peels off the bandage while I’m the one who ripes it off, sees stars for a moment, and then takes a deep breath and moves on. 

This difference in how we view life and the future has us at odds at times.  For instance, before he found out he had MS, we bought land to build a house.  He wanted to do it all himself so for about five years, he designed the house, researched materials, and found someone to draw the detailed plans.  Then he began to build the house.  We currently have a complete foundation that has been sitting there untouched for 2-3 years.  Last summer, he decided we were going to find subcontractors to start back to work on it.  He has not made much progress on that decision other than he has selected a builder and has some contractors selected and he’s re-designing the house to adapt to being in a wheelchair.

He has changed the design of the master bathroom to make it easier to shower.  He’s figuring out how to put a floor to second-landing ramp in the living room so he can drive his wheelchair to the two lofts that will be at either end of the open living space.  He continues to work on the new home, planning for the future.  He’s looking forward to the day he can oversee it being built and moving in.  He even still wants to add a pond in the back so he can fish….

Me, other the other hand–I’m thinking, “yeah right.”   I have no true belief that we will ever move into that house.  In fact, right now, I can’t say that I even want to.  The house we live in now is wheelchair accessible.  My daughter and son-in-law live ten minutes away.  I have a good neighbor I can call on to look out for the place if I’m away.  It could certainly be designed better for us but if we moved, I would have so much work to do to get the house ready to sell and I had rather burn it down than try to pack everything we have in it! (not really but it will truly be a nightmare to pack up)

If I share that with Lynn, however, then it’s the same as if I’m saying he will never get better.  He works out every day and pushes every day to get stronger so that he may someday be able to walk again.  I have to be so careful with what I say so that I don’t take that hope away from him….but I’m afraid to hope. I know how MS works, especially when it gets to this stage.  It doesn’t go away.  I occasionally hear stories of people who were in wheelchairs who walk again but I’m afraid to hope that that will be him because I don’t want to be disappointed when/if it doesn’t happen.  But I don’t want to stop him from hoping or trying either.  He needs that hope.  He needs something to work toward….and it could happen, couldn’t it?

What if he’s right?  What if the only reason he is unable to do anything for himself is just because he needs to build more strength? What if there is not permanent damage but instead what we see is his de-conditioning from all the set-backs he has had?  What if this new diet continues to make him feel better and by feeling better, he can do more and by doing more, he gets stronger and by getting stronger, he regains his ability to walk?  It could happen, couldn’t it?  If it did, then my reality would totally change and I would be willing to move and pack and whatever else was necessary to start a new life in a new home.

So what do we do?  Hope or live in reality?  I guess I promote hope for him with a strong dose of reality for me.  I still need to plan for “what if” and I still need to make sure his needs, as they are now, are met.  He can hope but I need reality to cope….that’s just the way it is….

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About mscaregiverdonna

I am a full-time caregiver for my spouse who has Multiple Sclerosis while I try to work full-time, take care of our home, and handle any number of other functions that used to be shared by the two of us. I'm learning that it's amazing what you can do when you have to and when you have God to send you the resources you need to manage moment by moment.
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3 Responses to Hope or Reality?

  1. hope…. never lose hope… i have MS so i can’t totally relate to the caregiver side of the equation… it’s nice to read your writing…so honest… my husband is a trooper and is always there to help me, to do whatever task i’m not up to doing or simply can’t do… but i know that he has feelings about that… and i know that at some point it’s going to become completely overwhelming for him… annoying… frustrating…tiresome…bothersome….

    and then there is me…. oh the guilt… the frustration… i HATE the feeling of be so dependent… and i’m still mobile, still working… pushing through most of the time… i complain little and refuse to ask for help… that is my downfall… but the guilt just eats me alive….

    thank you for sharing so openly and honestly the caregiver side of things….it helps me a great deal

  2. BinaB says:

    I think hope is a wonder powerful thing … But where to draw the line between hope and fantasy? that’s the tough part, especially from a caregiver’s perspective. Part of us doesn’t want to give up that hope that they’ll walk again or be the person they once were but the practical side of us (and let’s face facts…most of us caregivers tend to be more practical minded than not) wants to yell “are you freakin kidding me??? You wanna build a house/buy a car/cook an elaborate meal when you can’t do “insert basic life skill here”??”. It’s a tight rope act we walk…thankfully most of the time we stay on the wire…..

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