When my delightful, thoughtful daughter asked me to be a 'guest speaker' on her blog, I wasn't sure what I would like to convey to her followers. When I think of NMO - the disease - so many things flood my mind. When I'm feeling well, I'm optimistic and grateful for what this disease has given me this past 3 1/2 years. When I'm not feeling my best, I become frustrated, saddened and at times even angry. It's been quite a roller coaster ride - the only difference is, this ride doesn't end.
I could share with you all of the positive things that having a crazy, unpredictable, incurable, life-threatening disease brings. It has made me stronger, more grateful, compassionate, spiritual, aware, and appreciative of everything and everyone in my life. And it truly has. Or, I could tell you about all of the negatives. The many long days and nights I spend alone with my pain. The questions and anger when I make it through one battle after another only to be knocked down once again making it more difficult each time to rise. The thoughts of despair not being in control of my life. The frustrations of my body not able to do what my mind still can. The sadness knowing I most likely will leave this life missing so much of my children and granddaughter's lives.
But instead I've decided what I would like to implore to you all is this - touch your arms, your legs. Appreciate what they do for you every single day. Take time to do what you can, what you love, while you can. Someday might not be soon enough.Teach yourself to fully embrace your being and truly appreciate it. Open your eyes wide so that you can see the miracles that surround you. Show your love often and unabashedly to those you love. As difficult and unpleasant as it may be - realize that there will most certainly be physical obstacles one day in your life - this realization will make you thankful for what your body is now and when that day comes you won't have to wish you would have appreciated it. Look directly into the eyes and smile at those on your path that need canes, walkers, wheelchairs and know that they are people just like you - they just need a little help to move through their lives. Do what you can for others with unconditional love - that's what life is all about. In the end - it honestly doesn't matter what you have materially - only what you have in your heart and your legacy you leave behind.
I would ask you to visit the Guthy-Jackson site and read about the remarkable couple, Victoria Jackson and Bill Guthy, and the amazing strides they have taken to not only find a cure for their daughter, but for all of us suffering from this devastating disease. Although at times I have myself the best pity parties, complete with cake, I feel blessed that I was stricken with NMO at a time in which the disease is more understood, when there are improved treatments provided and testing to establish a positive diagnosis. It's a very rare disease with so many in the medical community that don't even know it exists. Yet I had an angel with me when I became blind to guide me to someone who did know and treated me quickly so that my vision was restored. I've also lived a full life and have seen my children become loving, compassionate adults striving to make a difference in the world. NMO knows no age boundaries. There are young children and young adults also suffering, fighting and ultimately losing their battle to this dreadful disease.
I am so blessed to have been held up and held onto through this struggle with my caring, supportive and compassionate family and friends. With my deepest appreciation to Jacy (I've gotten through many painful medical procedures remembering the words she told me one day long ago in the summer rain - you can do anything for 15 minutes); to Slade, my philosophical son who provides me with bright outlooks to the painful questions I present to him; to my husband, Rod, who rides the roller coaster night and day with me; and to all of you who have lovingly supported me and now Jacy and the NMO community - thank you.
Love, Patti
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