Thursday, June 25, 2015

17 Thoughts On 17 Years (Part III)

Low Tide at Sunset Beach. The Beach is HUGE!

"Dance is the hidden language of the soul."

--Martha Graham--

Water Designs

13. Love Makes All of The Difference. For Me, That Has Been Family, Friends and Dogs. Yes, it's cheesy. And no, we can't live on love alone. But it is SUSTAINING in its incredible power. If you are reading this post, you are likely one of the people who has loved me, sustained me, supported me, comforted me, stayed loyal and faithful when I could not reciprocate in any way, traveled to visit me, sent me cards/gifts/flowers, and simply LOVED me for me. You loved me in spite of illness. For my parents, that love has been full of sacrifice and heartache, but also hopefully, reward. Four dogs have loved me through this illness--Winnie, Asher, and now Tovah Rose and Gershwin. I literally cannot survive without a dog in my life. At an appointment with Dr. ANS one year, he commented on my support network. He noted that it was unusual for people with chronic illness like myself to have such an incredible support network. To all of you who make up that network and who have stood by me year after year, I cannot ever thank you enough or ever repay you for what you have given me. Your gift has been in giving me life when I felt I couldn't keep going. You have literally and figuratively been the angels who sing the song for me when I cannot.

Designs In The Sand

14. Forty is Looking Fabulous Compared to 30! A lot of my friends are bemoaning turning 40 or just getting older in general. I feel more hopeful and healthier at 39 than I did at 30. When I think about my life at 30 compared to where I am at now, I feel very optimistic about what this new decade has to bring compared to what I have endured the past 10 years.

At The End of Sunset Beach/Bird Island

15. How I Feel These Days. What Does 'Better' Look Like? I have no idea what 'better' will look like as time goes on, how much my body can heal, or what the maximum amount of functioning I might be able to expect is. I'm not sure any of us can predict that. Currently, my body has continued to heal with the support of PT, acupuncture, massages, counseling, more activity, and LOTS of medications. I have seen continuous improvement over the past several months. I think it is important to remember that I still sleep a lot, I still need a lot of rest, I still take a nap, I still have to use the wheelchair for outings, I still need a LOT of help to manage my life, I still can't focus to read much, I still have an awful time with standing. Put simply, I still have limited spoons. On the flip side, I sit up longer, I go out more, I can handle big groups and loud noisy places, I sleep better, I can watch TV or concentrate longer, I eat all of my meals sitting up at the table, I go out for meals, and so much more. The biggest way *I* feel these changes is in the amount of symptoms I feel and am aware of at all times. I used to feel that I could never escape the symptoms or the suffering from them. Now, I have times (and often stretches of time) when I am only vaguely aware of symptoms. It's a LOT easier to enjoy life when symptoms are not constant and overwhelming in nature.

Jetty At the End of Sunset Beach/Bird Island

16. I Am A Warrior. I Am Inspirational. There's a lot of talk in the disability community about these words, especially the word 'Inspiring.' Over the past few months, I have re-examined how I feel about these words. Cancer survivors or people with cancer are often called warriors. We have a lot of language for people who are dealing with cancer. We don't have the same language for people living with chronic illness. Finally, as I watched my beloved Golden State Warriors lead by Stephen Curry, I realized that the word Warrior is not reserved for cancer only. Lots of people are warriors. For all sorts of reasons. Including me. 

Moss Covered Rocks

The same goes for the word inspiring. People with disabilities (PWDs) often feel that being called inspiring means they are only considered inspiring because they are sick. Here's the scoop. Lots of people are inspiring--sick or not sick. And we NEED inspiring people in our lives. They make us better people. The issue is that we not make people inspiring simply because they have cancer or another illness or have lost limbs. Instead, we must call them inspiring not because of their illness, but because of how they live their lives and because of who they are as human beings. When I tell my friend Josie she is inspiring, it's not because she has Cerebral Palsy and many other health issues, it's because of how she lives her life. When I tell my mom she is inspiring it's because she's a pioneer as a woman and because she faces adversity with grace.  

I'm okay with being called inspiring or with being an inspiration to others. To me, that means I'm doing a good job facing adversity. If I tell you that you inspire me, take it to heart, because it's not a word I use lightly.

Rocks, Moss and Shells

17. Seventeen Years is a Very Long Time. Take a moment to think about the last seventeen years of  your life. How do you measure it? Children, marriage, jobs, grandchildren, degrees, moves, travel, love? If I really think about what I have done for 17 years, I wonder how I did it. How did I feel that awful for so, so long. How did I suffer that much day in and day out and not give up? 17 years is a long time to be mostly homebound, sometimes bedridden, and feeling horrible. It's a long time to miss out on what your peers are doing in life. It's a truly sobering number. I had begun to accept that my life would continue at a very low level of functioning. It's exciting to think that my life might be turning in a completely new direction. 

Loved Reaching This Part Of The Island!



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