Five years ago I was recovering from the long and painful jaw reconstruction surgery that (among many other treatment strategies) has helped me to continue the fight to stay alive. It's been an ongoing challenge to stay healthy, stay positive and stay grounded and yet it has also served to remind me that not all battles (indeed not all wars) are won. I've been on a win some-lose some streak for quite some time and I anticipate that there are ever more battles to be fought before the war is finally lost. But don't we all have some challenge, some battle, some adversity that needs to be addressed, attacked, overcome...accepted?
Caralyn is 14 years old. She has a condition called dystonia, a term so unfamiliar to me that when I went to Google it I mistakenly typed "dystopia." Well shoot, Caralyn for sure doesn't have that (and those of you that know her know what I'm talking about)! One day she was a perfectly healthy young girl with a passion for animals and music and community service and the next she was in a wheelchair, in pain and wondering what the heck was going on with her body. Dystonia is a disorder characterized by involuntary muscle contractions that cause slow repetitive movements or abnormal postures. It's difficult to determine what caused it in the first place (there are many possible factors or triggers) and even more difficult to live with because there is no cure (YET!) and treatment of symptoms to minimize discomfort is tricky because all have some negative side effects. Caralyn, who is as generous of heart as anyone I have ever met, young or old, has chosen to fight this with positivity (the girl never stops smiling!), spirit (best blinged-out wheelchair ever!), grace and an abundance of faith. She and her family have an uphill battle here, one that has only recently begun and I ask you to help them with your prayers and good thoughts.
Carole is 81 years old. She has a condition called Progressive Supranuclear Palsy ("PSP"), a disease that is often misdiagnosed as Parkinson's because of the similarity of many of the symptoms. It is progressively debilitating, affecting the nerve cells that control walking, balance, mobility, vision, speech, and swallowing. Eventually, a person's thoughts slow and they have difficulty communicating, even though they are aware and lucid and understand what is going on in the world around them. Carole (my mother-in-law) has spent her life actively - caring for her family, traveling, dancing - and struggles to reconcile herself to the wheelchair she is now in, to the limitations on her life, to the sad knowledge of her prognosis. She has NOT, however, lost her sense of humor. Ask her how she is doing and she will reply (with a sweet smirk on he face) "I have PSP stupid, how do you think I'm doing?" And she fights to stay involved and present in the life she has, most recently attending the wedding of her granddaughter Laura despite the difficulty of doing so. It is a lonely path for her in many ways (none of us can truly imagine what it is like for her) but her wonderful and loving family and friends do their best to make sure she knows she is cared for and protected and valued as she battles on.
Yes, my journey has been hard - but at least it didn't start at 14. It has been physically difficult at times - but at least I have had the good fortune to remain relatively active throughout. We all have our burdens and we all have our blessings and we all have our battles to fight. Ever more.
Blessings and Love to All.
