This word has been the banner of my MS story, the word behind the sparkle life.
But what exactly are we, I, hoping in at this point?
I receive emails daily filled with news of promising drugs on the horizon. Stem cell research is becoming something more tangible daily.
But the realist in me see's the whole picture: I see Obamacare and the hiccups it will cause in research and development in the medical field. I see the longated process that these drugs must endure due to money focused insurance and drug agencies. I see theories and ideas yet no promises or cures.
Most importantly, I see my body rejecting medications and procedures that are currently the promises of hope that are on the market today.
Yes, it's happened again; the third ms management drug I have tried in 18 months, Tecfidera, has been rejected. I'm now moving to my fourth drug, Copaxone. It is seen as the "weakest" ms management drug, the reason we have not tried it as of yet. However, before taking more extreme measures, we are giving it a shot with a MRI scheduled in January to see if any progress.
(Oh and the most fabulous news about this is that Im moving from an oral drug to a daily injection. Now I didnt really like Tecfidera and I dont mind needles. It's just a mind over matter situation I have to work through).
The most frustrating thing is that I am encouraged to hope in the future of medicine for the help in controlling my disease or even more promising, a cure. Yet I have no signs so far that even if these things were to arise that I would be able to respond.
The drugs that do work, the drugs that allow me to "look so good" and have an actual quality of life are parkinson's drugs. And my day to day life is held together by these drugs. Yes, I may be getting stronger but goodness be if I forget a dose.
And though these drugs bring me support throughout the day, they do not heal, they do not stop the pain. It pains me to do anything human: to bath, the brush my teeth, to eat...even typing this is a challenge as my hands struggle to remember the keys that I have graced 1000's of times.
This leads me to question: where does my hope lie? What can I hope in that will allow me the grace, courage and strength to continue living with MS?
The easy answer: God. People say that God does not give you more than you can handle but I dont believe this. I believe God sometimes gives you more than you can handle so that you are reminded how much you need to dive into your spiritual side. How much you need that spiritual support. I hope in my faith, in the afterlife.
I hope in love. I hope in the love of my family, my friends. That through my experience I can learn to cultivate deeper our relationships and learn from their support.
I hope in myself. I hope that I am strong enough to continue smiling and sparkling despite the let downs, the discouragements, the pain, the tears.
I hope in the MS movement. The drugs and procedures may not work for me yet they will work for 1000s of others. And if I can be a voice on their behalf, well how beautiful is that?
I hope in the sparkle. I cant really explain what the sparkle is. It varies from the perfect cup of coffee on a bitter day to a postcard in the mail to a smile through the tears. Sparkle isnt just glitter on a paper. It's a way of life for me. And I hope in it. Because it makes me happy.
And I have come to find that happiness is one of the best drugs there is.
Hope isnt easy. In fact, I would say to hope is one of the hardest callings a human is called to. For it is a surroundering; the understanding that right now totally sucks and there isnt much that can be done except hope in things that we possibly cannot control that it will get better.
Hope isnt a promise. It doesnt guarantee. It can disappoint.
Hope is believing that life is too beautiful to believe that today's hardships outweight tomorrow's beauty.
Hope is the reason.
And together lets never let go of that hope.
Love,
"We must accept finite disappointment, but never lose infinite hope." - Martin Luther King, Jr.