Aeschylus was the founder of Greek tragedy. And he sounds like a real downer to have at a party.
People continue to tell me how brave I am and how much they admire my strength and how handsome and funny and humble I am (okay…not so much those last 3). I get a lot of “Looking at you, I’d never know”. And, especially, people want to know what you learn through the experience of having cancer.
I like Aeschylus’ quote. I think he sums it up nicely. You live, you learn. I think we spend a lot of our time not learning, not experiencing. We are busy. For me, right now, the world has gone from being slow and anxious while I’m in treatment, to flashing by as I rush to get school papers done or complete projects or run around doing errands. And soon, my world will shrink again to the size of a hospital room. And it will slow down to a crawl as I deal with my next transplant. There is little time in the real world for reflection. And health issues force us to slow down, re-prioritize and experience more.
So, what have I learned?
I have little tolerance for fools. I find people more frustrating than I used to. Although I try to have a deep respect for people, if something happens that causes me to lose that respect, I try to move on. I also fight more – I fight for my rights, for the rights of others. I fight for opportunities. I don’t take no for an answer, at least not on the first go-around. While, at the same time, I try to practice patience for the things I can’t control – traffic, PET scans, weather.
My memory is selective. I only have a vague recollection of my experiences the past 3 years…indeed, the past 35 years. There is something to be said for hanging on to the suffering, to the pain. It is a deep learning experience when you are going through it, but the mind tries to put that pain behind once it is time to move on. I find that both a relief and a disappointment. For all the pain and all the discomfort, there is something about the experience that I want to hold onto.
Recently, Jen and I went through a big lesson brought on by the generosity of our friends and associates. It is important to me that I share this lesson. For us, this has become an elephant in the room.
A couple of weeks ago, Jen and I were handed a big surprise. Apparently, friends of ours organized a fund raising drive for us. They did this without asking and attempted to keep the whole thing anonymous. So, we were handed a letter, signed by Anonymous, that wished us well and supported us on our cancer journey. Attached to this letter was a check, also signed by Anonymous.
The generosity shown by this “Anonymous” group of people was shocking. And, to be honest, a little off-putting. Let me explain our side of this experience – and the lesson we have learned…
First and foremost, we are grateful. We have always tried to be grateful over the past few years. Whether it is a card in the mail, a gift certificate for food delivery, contributions to UCLA hospital in our name, donations to the DVD drive, rides to doctor’s appointments, lasagna delivered to our door – we have always been deeply, deeply grateful. Our friends and family have demonstrated depths of caring that we never thought we would witness. In times of crisis or hardship, the amount of support that can come from those close to you or those whom you hardly know is incredible. This generosity gives me hope and strength and inspiration.
Many, many people have made themselves available to give us help and support. We have been lucky (so far) and we haven’t needed too much in the way of outside assistance (other cancer patients aren’t so lucky). We have always tried to direct people’s goodwill towards places that serve the most good.
However, even those people who mean well, sometimes cause a little harm along with the good. People want to help – we would feel the same way if the situation were reversed. But people also need guidance. In their eagerness to be helpful or caring, they lose sight of the fact that they don’t truly understand what it is we are going through. I think all cancer patients (and pregnant women and AIDS patients and anybody not ‘normal’) share this feeling. It is part of the process of needing help, of being ‘different’ – instead of being the person who is providing the caring.
There is so much that I can no longer decide for myself. I am at the will of doctors and hospital schedules and PET scans and medicines. It is important to us that we keep control over certain aspects of our lives. One of these areas of control is maintaining our privacy and managing other people to suit our needs and our schedules.
So, we were definitely stunned when an Anonymous donation found its way into our lives.
Of course, we understand that this gift is meant with ‘good intentions’. Of course, we understand that people want to show their love and support for us. Of course, we are deeply grateful and honored that so many people in our lives have rallied together and gone above and beyond for us. Of course, we accept this gift in the nature it was intended – to help us in a time of need.
However, right now, we don’t need the money. We didn’t ask for it. We’re not even allowed to thank or acknowledge the people who generously gave it to us. And now we are responsible for it. This makes me uncomfortable.
We thought long and hard about what to do with the money. Although we are on solid footing now, we can’t predict the future.
It is important to me that I share with you our plan: We put it away in case a day comes when we do need the money. I may lose my health insurance. Medical bills may rise. My recovery from my stem cell transplant may prove more difficult than we expect. Who knows what will happen?
The money is in a separate fund. There it will sit until the day we either need it or we can pass it along to a worthy cause.
There are many, many cancer patients I know who aren’t as fortunate as us and I know they can benefit from the money. Those without insurance. Those who have lost their job. Those who cannot afford healthy food. Those who travel long distances to get the best care. Those who spend days, weeks, months away from their homes while they recover. Along with my burden, I like to think I carry a little of their burden with me as well. And, as much as you want to help me, I want to help others.
You may not see the elephant in the room. But it has been standing over my shoulder for a few weeks now.
Consider this blog post a reflection of our deepest, deepest gratitude for your generosity – to all of you. Those who donated to this cause or to any other. And to those of you who haven’t donated a thing, but continue to send us supportive comments or think about us once in awhile or pray/meditate on our behalf.
Thank you. Thank all of you for being our friends, family, audience and supporters.
In other, brilliant news – My latest PET scan is clean and I am green-lit for my allogeneic stem cell transplant. My brother has his flight booked (paid for, in part, by the Anonymous donation) and UCLA is working on scheduling and formalities. Tuesday I go in for my pre-screening tests (PFT, Echo, EKG, lab work). Hopefully, by the beginning of October, I will be locked away in a hospital room at UCLA, tubes in my arms, getting ready for the most challenging treatment yet.
Does anyone have any change for parking?