Dear Friends,
I hope the week before Christmas for you is full of parties, reconnections and good food. It sure has been for us. Other than speaking for the social service department at Lucile Packard Children’s Hospital, I haven’t “worked” at all. There have been many holiday parties since our Dec 5 event. Today, I sent off my last package to out-of-town family and went to Ana’s fiance’s family’s holiday bluegrass music shindig. Lately, I’ve baked; my table is covered with Christmas cards (sorry, you may get yours late); my end-of-year donations have been made; I’ve bought Toys for Tots and packaged goodies for close friends. On Monday night I was up til 1AM baking cookies and fudge. I made sushi for my band potluck; I’ve worn more red this month than any other month. I’ve bought all but two gifts online, avoiding germs in the stores. My parents arrived to the Bay Area on Wednesday to see their 2 week old grandbaby, who is growing slightly and the most beautiful baby I’ve ever seen. We are almost ready for Christmas!
I’ve been out to lunch with more friends in the last week or two than in a good year. For the month after coming back from Japan, I needed to stay home, hermit, tend to my solitude and re-energize. Now I’m reconnecting with the many dear friends I’m privileged to have. Aside from a few of Andrew’s friends, and a former colleague, most of my friends are due to the CF and transplant communities. So when the holidays come around, we all mutually share this amazement that we’ve lived to see another Christmastime. We “get it”, how wonderful it is to celebrate another year, and we get the illusion of “Through the years we’ll always be together”… Today I wandered the streets of San Francisco with Rich D, a fellow CFer, and talked about what could’ve been, what we’re struggling with, what cute shops they have in SF, what our golytely schedule is… really RELATING. It’s so great to connect deeply with people because of illness. On Tuesday, I sat around a table with lung transplant friends who are 9, 8, 7, and 3 years post- transplant, and celebrated a meal with our favorite former doctor. Dr Doyle has been so extraordinary- compassionate, funny, human, open, empathetic, brilliant, competent– the kind they try to portray often just on TV. We reminscised about old times, old friends who are no longer here, and where we are in our lives. Even doctors have ups and downs, and kindly Dr Doyle says she draws inspiration from her patients. I’m glad it’s a two-way street.
On Friday, I went to the transplant clinic for the first time in 3 months. Amazingly, my PFT was higher than it’s ever been in my entire life. It is 7 points higher than in September! I don’t know why; perhaps because I piped at my two Christmas concerts last week, or because I swam last night. But my exercise habits have been down the toilet, since I still have a boot cast on my foot. I also realize my donor would have turned 24 years old in September. He’s be in the prime of his life and his health. I can’t help but wonder if his lung cells have reached their maturity and have graced me with this extreme health this year. I’m just so thankful. I am so thankful I wish I could spare some lung function to give to others in need of it! After clinic, I visited a friend in the hospital, who is having hard time. Everyone with transplant has to deal with certain complications. Even Ana has a cold now. We will never be fully healthy, but enjoy every moment of normalcy we can have.
My downtime since Japan is short-lived. I have been seeking a job but haven’t found openings in what I want to do, so I’m planning on teaching a “writing to heal from grief” workshop at our local hospice (as a volunteer). I had an interview on Thursday and had a very good rapport with the coordinator. I’m looking forward to finally going outside my CF/transplant world and using my experiences to help others. I’m constantly in an inner battle between wanting to be ‘normal’ and engaged in the normal world, versus feeling so validated and confident in the CF/illness world. I want to be recognized for who I am and the skills I have learned and can offer to help people, not because of my story or my unintended circumstances. I am honored and privileged to be so active in the CF/transplant community, but I am yearning for a professional outlet as well.
I’m pleased to share that I’m going to the Donate Life Rose Parade Float decorating in Pasadena on Dec 29 and 30 to help decorate the float, with our film crew and dear friend Tiffany Christensen. This float is the biggest public awareness event for organ donation in the country. It’s jaw-dropping to see the float for the first time in the cold warehouse, with Donate Life volunteers working hours and hours to beautify the massive monument. This year’s float is called “New Life Rising” and features a phoenix bird. Check out www.donatelifefloat.com. You can dedicate roses, and I’ll be placing my dedicated roses onto the float on the 29th.
On a final note, due to my participation with the Heroes of Hope program, I had an awesome one-hour interview with Dr Paul Quinton. He is a cell biologist who has CF, and does basic CF research. He is also one of the key discoverers of the chloride channel defect. I completely idolize this genius of a scientist, who dedicates his life to finding a cure. Many of the drugs in the pipeline have therapeutic properties related to Dr Quinton’s cell transport findings. One striking thing he told me is that “everybody wants to be needed”. He gains fulfillment by feeling like his work in CF research is needed and he’s doing his part to fill the need.
There are times in my life when I haven’t felt needed; I think being sick can do that to you. There are rarer times when I felt needed and capable of offering what was needed. That is called fulfillment. I spend my days seeking fulfillment. The Japan trip offered fulfillment; now I wonder what’s next. Do you feel fulfillment?
Anyway, I ramble as usual, so I’ll sign off for now. Please take care and enjoy your last 2 weeks of 2009. Stay healthy and free from holiday germs. Good luck to all of you back East! It was 62 degrees here in CA today!
Hugs and love Isa
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