Monday, January 25, 2010

Walking the Beth

I shouldn't write how I really feel late at night, but oh well.

People want to help. That is a good thing. But sometimes, I have to be honest, it can be annoying.

There's someone who wants to help me and keeps trying (oh no, they're thinking like my "come back tomorrow post!"). But they have THEIR ideas of how I should be helped and what is best for me. They keep pushing these ideas. I have even said (in different words), "I think what I am doing makes you much more uncomfortable than me." "Yes," they admit. But then back to their agenda of "but, but, but, ... you should do...... , you do better with the wheelchair").

I have a walker. I also have a wheelchair. I also have the walls of my house, covered with fingerprints. I have trouble walking. I also have severe leg cramps. If I don't walk during the day, my legs will cramp all night and I won't get any sleep. So I walk and often call it "Walking the Beth." Besides that, as uncomfortable as it may make others feel, I like to walk. I love to stand and stretch my legs. It feels great! So I stand and walk.

I cling to hope that something will come along to make walking easier, faster, something. It seems that something is on the horizon--it's exciting. And if I had given up my choice to walk, that possibility would be more difficult.

So I walk. So others feel uncomfortable. So some voice that they think I should not walk. So I feel like telling them to shut up, if I'm being really honest. People push me on my walker when I'm tired. But I still get to stand more and it feels great. People don't seem to understand that.

So the prayer is, God, could you help some people who have agendas for me perhaps focus more on themselves, even though they are trying to help? What would help is if they would let me choose. My life, my choice, God's support.


Colleen O'Shea said...

Hi Beth,
I don't have MS. But my sister-in-law mine does. As did her mother.

Health problems, and MS in particular, effect more than just the person who has it. And when my sister-in-law found out a few months ago that she too had MS, the family decided to take an active role to help support her -- perhaps in a way they never did with their mom. They were only teens when their mom got sick: now they are grown men who love their sister and don't want to see her deteriorate the way their mom did. And perhaps our trying to help or opinions on treatments or diets or exercise are Over The Top and perhaps our trying helps us feel a bit powerful over such a debilitating disease that's already hurt us once.

I admire your courage. I love it that you try so hard and walk even though it hurts and refuse to take the easy way out. I'm glad you're angry. But don't get mad at them. They love you. Get even madder at your MS and calmly tell your advisors that you're not going to back down because it's the only way you feel you can still have the upperhand against this disease.

MS sucks.

ms'er faith said...

So the problem would be that I have told this particular advisor at least 10 times what Colleen says, yet they refuse to give up because they seem to be on a crusade.

I guess the point of the post is yes, advice is good, to a point. Once you have been told repeatedly that you are moving on, the advice gets old.

My mom has all sorts of suggestions, but she knows when to back down. So do other people. I like suggestions. I take a lot of them. MS affects everyone, yes. But listen to the person who has MS and it's pretty clear when they have had enough.

Colleen O'Shea said...

I thought about what I'd written after I pushed the send button, and felt that I should have said more. Like this: Don't back down. Not with the disease, not with the people who want you to take the easy way out. Let them know it's important for your self-esteem and for your fighting spirit. It's that one-leg up that you still have against MS.

Keep on walking, and fighting the good fight.

ms'er faith said...

Yes, and people DO have the best intentions. It's just that some people go on overdrive with well-meant intentions :)