Tuesday, May 26, 2009

Fear & Hope: Siamese Twins in the Dance that is MS

So, I did it, I set aside my fear and took a vacation. Away from my support system, my doctors, my comfie bed, and into the unknown. Leaving behind my electric wheelchair--airlines just can't seem to transport them, and accepting the confinement of a manual chair. So many unknowns: would the hotel room be accessible; could I deal with airlines; would my health take a downturn.
One of the hardest thing about living with MS is the fear. Is today the day I will lose my vision? Can I swallow this bite of food? Will this pain get better or worse? From moment to moment, day to day, my symptoms and abilities change--the only certainty is that the MS will worsen.
Surprisingly, hope is harder to live with than fear. Fear is a green skinned giant: to be faced, overcome, and wrestled with. Hope is the wait for Christmas morning, the first paycheck after a raise, or the plus sign on a pregnancy test.
Hawaii was great--I swam in the ocean with son for the first time in years. My symptoms were manageable, and the airlines weren't any worse than usual. So, in skips hope--could I do this again? My husband and I dream of possible locations: camping in eastern Oregon, Moorea, or a cruise. Suddenly, hope is in the air. And, some part of me knows what a dangerous element it is to play with.
I know that MS is unrelenting and that my symptoms are worse than six months, or one year, or five years ago. I am caught in the unbreakable grip of a tenacious illness. But I don't know when or what will be the next ability to go
It is foolish to hope that I might take tango lessons--I haven't walked independently in years. Hope requires an expectation of joy found in the unexpected. Can I cope with the disappointment when my hopes are dashed. I dare not give up on hope, or conquer the fear: I need both to temper and polish my dreams.

Tuesday, May 19, 2009

Hawaii Days

I was so nervous to make this trip. So far, I am handling it, with the constant help of my 'boys.' The airplane trip was doable--United put me in row 40 of a huge plane and it was just about impossible to drag me in an aisle chair that far back. Talk about humiliating. Thank goodness the airport transport folks were professional and didn't make any comment about my big butt. My husband assures me that the aisle was so narrow--most people's behinds wouldn't have fit. And, I have the bruises to support his theory.
I am trying to savor every moment and not let the pain and fatigue interfere. That effort, in itself, is tiring. Yesterday we got to a restaurant just before it was closing. It was hot, I felt pressured and with the heat my cognitive abilities dropped. So, I snapped and barked at my son. I hate it when this illness seems to take over my personality.
We are going to a beach with a sand wheelchair today -- it is exciting to think about putting my feet in the ocean. A rare treat that I've only accomplished twice in the past 8 years. Watching my son boogie board in the water will be worth any obstacles we encounter.
So, short and sweet--Hawaii is more than worth the effort. I can't help but think this may be my last trip of this scale. But, who knows, I seem to be keeping it all together and having a wonderful vacation in spite of the challenges. Aloha

Tuesday, May 12, 2009

Balancing the Bitter and Sweet

This week I am taking a vacation to an exotic locale. Visions of fruity drinks, swaying palms, and glittering oceans should be dancing through my head. Instead, I find my thoughts lingering in the uncertainty of MS, the vagaries of its manifestations, and the banality of living with it.
It is the uncertainty and lack of control over the disease that forms a barrier to feelings of excitement or anticipation. Questions rattle around in my head about my ability to handle the travel, leaving behind my electric wheelchair, and wondering if my illness will intrude on this dream vacation.
The pull between the longing, enjoyment, and anticipation for doing something with the hovering realities of what my body may or may not be able to do is a constant presence. I look forward to attending church all week. Often it is the one event where I interact with others socially and, my church family is deeply important to me. At the same time I know that the fluorescent lights, busy crowd, sitting for a couple of hours, and conversing with folks will take a tremendous toll. Often I sleep for hours when I get home and it can take two days to regain the limited strength I have. Every Sunday morning, the temptation to stay in the controlled environment of my home is difficult to overcome. Will there be a day when I just can't attend church--something I've done most Sunday mornings for over 12 years?
This push and pull flavors all of my interactions with others. Is it possible to understand the unrelenting impact that MS has on my life? Yes, five minutes ago I said I wanted to watch that TV show, but now my pain level has jumped and I need to go to bed. I know we made plans to go shopping, but my eyes are hurting and I can't handle a crowd right now. I should be jumping for joy about my vacation, instead I am trying to plan for the unplannable.
Another subtle pressure is my desire to meet my commitments and not disappoint the person or people I am interacting with. If, on this dream vacation I don't feel well enough to play--will my son and husband's vacation be ruined? When I can't meet deadlines, or make appointments, or even get out of bed it is difficult to accept my own disappointment--let alone handle the same reaction in others.
The danger in my efforts to push myself beyond what I know is my limit is the impact it has on my health. Just a couple of days ago I used a pair of scissors and a knife to prep two artichokes--it took about all of the strength I have in both of my hands and arms. Since then, my right arm is having painful spasms, and my wrist and thumb are weaker than usual. I expect that the strength will return and the spasms will lessen. All this from a few minutes prepping vegetables. I know my husband will be annoyed I didn't ask for his help. Does he know how desperately I want to be able to perform this routine chore?
The theme of my life is Grace:

elegance of movement. This is about accepting myself as I am
courteous good will: This is about accepting others as they are
3 attractive qualities or behaviour: This is about claiming joy-In spite of
4 the free and unearned favour of God. This is about the assurance of His plan for my life
6 a period officially allowed for fulfillment of an obligation. This is about accepting the unending care and commitment of my 'village'
7 a short prayer of thanks said before or after a meal. This is about acknowledging both the bitter and the sweet
lend honour to by one’s presence.
This is about the value of existence (Psalm 139: 1-18)
2 be an attractive presence in or on. This is about accepting myself as I am
ORIGIN Latin gratia, from gratus ‘pleasing, thankful’.

This is about choosing a life worth living.

Tuesday, May 5, 2009

Hermit Days

Today, I would rather live in a cave--somewhere dark and troll-like.

There's nothing wrong with here in my comfy, cozy house. Actually, I can't say that a traceable thread of occurrences led to my current mind set. My affect is more than a reflection of the spring rain that is falling so heavily outside my window
I can't say that I am lonely or bored---maybe more one dimensional?
MS is the elephant in my life. Today, it feels like Dumbo is sitting on my head.I can't seem to escape its impact.

So, I am listening to my spirit and my body and just hitting 'pause.'

I have a radio station playing as I write this and this song just began to play..........

There will be a day with no more tears, no more pain, and no more fears. There will be a day when the burdens of this place, will be no more, we’ll see Jesus face to face. There will be a day, He’ll wipe away the stains, He’ll wipe away the tears, He’ll wipe away the tears…..there will be a day."

These words are from a favorite song, There will be a Day," by Jeremy Camp (
song -- lyrics)

On these glass half empty, if not running on empty, days---I must turn my thoughts toward the riches in my life: family, friends, & God and work to shut out the persistent echos of this insidious illness.