Life. After Death.
360 Blood Transfusions, 20 Plasma Cell Transfusions, 2 Bone Marrow Transplants. 1 salvaged life.
Here are my lessons from being on life support for over 2 years.
For those of you who know me, I think we can all agree that I’m an okay gal. I believe we all live on a spectrum of positive and negative traits that showcase different versions of ones personality. My spectrum tends to elicit reactions that range from “whoa, she is really fun and smart!” to “whoa, she is crazy…like, I actually think she is insane.” But no matter what your preconceived notions of me are to date, I promise I have a few good lessons from my long slow dance with death and subsequent recovery. For those of you who don’t know me — here is a quick synopsis:
A strange pregnancy induced bone marrow failure. A rare autoimmune disease most common in Asia. A stillbirth that shook a family to its core. A woman with a need for blood transfusions twice a week or she will die. A blood clot in the head, a debilitating anemia, multiple failed chemotherapies, 2 bone marrow transplants, 1 rare disease called “smouldering myeloma”,a possible link to a cancer cluster caused by the waste from The Manhattan Project. A small family torn to pieces.
And then finally, a healthy body and a healing mind after years of turmoil.
These all read as a list of ideas for episodes of Grey’s Anatomy. But no, these are the little life assignments we have been working through these last 3 years. So, while you and I may not know each other, I promise that these lessons may be helpful to anyone who is interested in surviving this little journey we call Life.
Here are my top insights and truths that I have learned in this “trial by fire” life journey:
Miracles are real. They aren’t as simple as the version of “miracle” we were told in the Bible, but they exist.
You are stronger than you think, even if you are tired.
Water is healing — make it a point to drink more, swim more, and try to connect to its healing properties.
When you stare down death, some people will leave your side. It will break your heart.
When you stare down death, some people will stay by your side and hold your hand. It will heal your soul.
Some people can handle being close to death. And some people cannot. This bittersweet reality is knowledge you can never unlearn.
A nurse will most likely be one of the last people you see when you die, and you will realize that nurses are angels let loose on earth to help care for our human bodies when we can’t muster the strength to do it for ourselves.
Your body and mind are connected, take care of your “mentals” as Marshawn Lynch will say. Never feel shame about seeking mental health help.
When you lie on your death bed, you will ache with joy and pain for all that you have experienced, and grieve for things you didn’t do. Try to cover off on your bucket list, so you can look back with joy at your phone’s photo library.
Have a mantra. Mine was “Not Today”. A simple turn of phrase that acted as a call to action and defiance of deaths call. When I was in my darkest hours — incoherent, swollen beyond recognition, on a feeding tube, I knew all I had to do was repeat — “Not Today death, maybe a day down the road, but Not Today.” Make your mantra simple, so you can recite it in your weakest moments.
Insurance can mean the difference between life and death. Make sure you have one that fits your needs, and ask your doctor “will I be treated any differently if I have a different insurance?”. This is a sad truth of medicinal intervention, but doctors sometimes have to treat to the insurance available. (My medical team NEVER did this, but I learned about this truth from spending days on end at MGH. It’s an insurance issue, not a doctor issue-we as patients need to take ownership and ask.)
Fall in love with yourself. Seriously, if you are harboring internal anger or frustration with yourself, figure out why, and decide to love who you are before you die.
Give more hugs and kisses. I never realized how much this type of contact is therapy. Hug your family, kiss your kids, be that person.
Our spirits live on in those who we love — so choose wisely how you give out your love, these cherished few people will be those who keep your memory alive. I promise you that work colleagues will be supportive, but they will not be those who carry on your spirit. Friends and family — show them the love, stop worrying about what your work thinks.
Listen to music and invest in good lighting. In my 80 days and nights at MGH I always brought good lighting, and a good speaker. These items create an environment that allows you to connect with yourself.
And finally, my last insight: We can save each others lives. We are so clearly intertwined as a species. Hundreds of anonymous people donated blood and marrow for me to survive. The lesson is not that I am special, the lesson is that while we worry about what we lack on a daily basis, we miss the very truth that we can help save each other — only if we look up from our own insular lives.
So with that, I ask anyone reading this to donate blood, and JOIN the bone marrow registry:
I have no idea what the future holds. So far, life has really surprised me. What I know to be true is that I couldn’t be more grateful to have the honor of reporting these field notes from my long dance with death. And have the honor of walking around in this borrowed immune system. (Thank you anonymous donor WE WILL MEET SOON!)
To all those who sat by my side in this ongoing trial — thank you for your bravery, thank you for your kindness, thank you for believing that even in death, I was worth your time. My hope is that I now live long enough to make some level of impact in your lives. And I hope one day my 6 year old son can read this piece and know that his family took life’s challenges, and tried to turn them into lessons.
Be brave, remember miracles are real, and we can save each others lives, physically and spiritually.
With Love,
ESG
