I've been wading my way through what seemed an unsolvable quandary: dare I do or dream a thing when the specter of MS is always waiting in the wings to swoop in and steal the show.
This past weekend my brother came to town to spend a few days with me and others in the family tribe. He lives in Vermont and so his visits are all the more precious, because they are rare. His unending empathy and his ability to 'get' this illness, have helped to move our relationship from siblings to friends. {don't worry, bro. I haven't forgotten about the tacky 'more than a brother, a friend t-shirt that I owe you!}
It was one of those halcyon weekends with beautiful crisp clear weather that seemed to reflect brightly the connections and moments that came together to make it extra special: sharing memories of childhood family backpacking triumphs; tromping around with my 4-yr old great nephew; sharing early-morning coffee with my brother; eating way way too much at the Pilot Butte drive in. Flashes of moments that I will treasure in my memory for the rest of my life.
As we were all busily cleaning the vacation home we shared my brother asked me to take a moment and listen to a song he found particularly moving. The artist is Iris Dement, a web-described cowboy folk-singer whose lyrics are amazing. It was another song, "Shores of Jordan" on the disc that provided my transforming moment.
Music is a powerful tool for helping me to express and clarify my thoughts. From favorite songs and singers to tunes I've never heard before: transformation can come from unexpected places. Iris provided the words that gave me the answer I've been searching for:
Well, I looked up into heaven, I thought I'd solve life's mysteries.
I observed the constellations for a clue to my destiny.
But the rhyme of life confounds me, things will be as things will be.
So I'll just dance the shores of Jordan 'til the angels carry me.
I'm gonna let my feet go dancing to my very favourite songs,
'Cause I know my time for leaving is bound to come before too long.
And there ain't no way of me knowing how tomorrow's gonna be,
So I just dance the shores of Jordan 'til the angels carry me.
So, in a few sentences, tied to the last hours of a special weekend, I knew that I want to live. To relish and enjoy everything that I can. I'd be lying, if I didn't admit that this past weekend's adventures aren't costing me this week. My usually strong right side is dragging, my pain level and exhaustion are off the richter scale. It may take days for me to recover
But, in spite of the price I am paying for letting every line of my dance card be filled in—I choose to dance.
And the answer is:
Split neatly into two camps—those with MS and those who haven't had the pleasure. (to read more about the question go to my Previous Blog)
Those with MS expressed that there is no easy answer to the question of whether or not to risk doing a thing and face the crushing disappointment when our bodies fail us.
The 'peds' universally said go for it. It almost seemed like a wall of cheerleading shouts, trying to drown out the downer that life with MS can be.
Personally, I don't know. Reach for dreams or stay safely within the limits? So far, no answer makes sense or fills in the blanks on the 'paint by number' I am working on.
I am not sure that my non-MS people can really understand the quandary, no quagmire, that living with MS creates. Maybe my experience yesterday can illustrate. I woke up after a fairly good sleep feeling about as good as I do. This happily coincided with a monthly gathering of women for a crafting circle. I went for a few hours and enjoyed myself. I knew it was time to go when the fatigue hit in waves and I started to have micro twinges in my muscles. Home I went and within the next few hours MS started to charge me the price of playing. Stabbing electrical strikes in my left thigh, all over twitches, spasms and charlie horses (lumps of hard muscle that slink away with massage only to pop up again in another part of the limb) The most frightening are the electric jabs and weakness in my right leg, which is usually unaffected. 24 hours later I am in too much pain, too fatigued to get out of bed. Church wasn't possible.
Was it worth it? Not right now, it wasn't. I hope that my nonMS readers will better understand the dilemma. The real world toll that doing something as simple as sitting and doing a simple craft for a few hours can make me pay.
I wish I could know ahead of time what the MS cost will be for a given activity. Then I could decide if it was worth it.
Footnote:
A couple folks expressed surprise that I was 'doing better' than I had expected. I read back over my last blog to see what they meant. I believe this sentence "My recovery from the July relapse and hospital stay is better than I ever expected." has created the confusion. I am not miraculously cured or ready to run a half marathon. The July relapse led to 10 days in the hospital, loss of function on my left side, and the inability to transfer or dress myself. I came home to a hospital bed. So I am doing better that I was in early August, but compared to what? I can be left alone during the day. I have learned to roll over and have increased use of my left side. My left hip seems permanently profoundly weakened, and scooting to the left is difficult at best. Better? The hospital bed is gone, function has increased, while decreased cognition, weakness, and other symptoms remain.
Footnote 2:
Please, please, please would folks stop telling me that I am just forgetful, or getting older, or compare me to folks who are forgetful and older than 65. I don't mean to offend anyone, but the cognitive problems I have aren't related to aging. Thank you.
On the surface floats a rather obvious answer. My culture is rich in a sort of Horatio Algieresque bravado: a climb every mountain, sail every sea, be all one can be despite rain, slow, sleet or what have you. So, as long as one can do a thing, or dream a thing—one damn well better.
Imagine working for years to build a house. Each room carefully designed for form and function; from the lovely solarium looking out over the rose trellis to the cozy den with its well-appointed wing chairs and grand fireplace. One day, a letter arrives in the mail that the bank is oh so very sorry, but there was a terrible oversight and they will be foreclosing on this beloved house. The letter doesn't specify a date or a time; but it will happen. After wrangling and fighting; the house's loss is a foregone conclusion. The owner can batten down the hatches and refuse to recognize what is coming or the owner can pack a few things and depart or the owner can quietly close down the place; shroud the furniture, close off room by room; and hunker in to live out the days left to the house.
With the steady onslaught of loss caused by progressive MS, the third option was always my choice. A continuous process of closing doors and putting away those things I can no longer do. Sold the bike at a garage sale years ago; stopped driving with the arrival of aural neuropathy and weakness; left the dream job and never went back; stepped back from volunteering at my church; from the practical day to day functions to the bigger things like my dreams of an old age with my hubbie; I've chosen to close the door, mourn the loss, and move on. It is harder to cling to the cobwebs of what if and maybe and constantly be disappointed than it is to let go of losses and pack away dreams.
Over the past few weeks I've wrestled with a fourth option. Some events that seemed too far away are now close, such as my son's 2012 college graduation. My recovery from the July relapse and hospital stay is better than I ever expected. And then, there is Desmond TuTu.
A delightful young woman I know spent last semester sailing around the world. He was part of the faculty leading and teaching during the trip. On a shore excursion that had an audience element (I am fuzzy on the details) she was sitting in the crowd when a hand tapped her shoulder. It was Desmond TuTu offering her popcorn from his tub. She took a few polite kernels. This exchange repeated itself several times. Finally, he leaned over, held out the tub, and said, "Be Greedy." Take a big handful, dive in and don't miss the buttery ones. Don't be polite, or shy, or resigned to a little bit. Be greedy.
I heard this and had one of those clear, bell tolling moments. Here I am settled into these clearly defined square feet of my life. Resigned to the room or two I live in while I purposely allow the rest of the house to slowly molder away. Can I, should I even consider opening any door, pull open the curtains on any of the things I have worked so hard to let go of?
For a walking talking non MS person the answer is simple: yes, be greedy. Life without adventure and dreams isn't worth having. But be careful, don't forget for one minute that MS is beating at the door and any minute I could have a huge relapse and no matter what I wish for I won't be walking or working or dancing again any time soon.
So, do I plan to go to New Orleans next May? Do I delve into the garden catalogues that come in the mail. Is living with the maybe of it make any sense. Or would it be better to firmly and quietly make decisions now.
Be greedy...Is that possible or even wise in the world of MS?
