Today marks my mother’s fifth deathiversary. I know, not funny, but it’s true. As I’ve written before, the period from right before Thanksgiving through Christmas tends to be one filled with emotional adventures for me. One minute, things are fine, and another, she’s all over me, assaulting me with memories of the last two weeks of her life or amusing me with visions of the other thirty 34 years plus I shared with her. I’ve reached the tipping point where the visions outweigh the assaults. But, that’s not what I intended to write about.
Honestly, I didn’t intend to write at all, but my fingers somehow clicked out of Twitter and ended up here…typing. Well, after they checked email and found an email thanking me for supporting the Multiple Myeloma Research Foundation Race for Research. I didn’t even open the email, only read the portion of the subject line that was visible before I felt anger welling up inside me. See, since she died, I haven’t supported the MMRF or any other of the multiple myeloma-focused organizations or efforts that used to be welcome to visit my inbox. And, I swear, I unsubscribed from them all shortly after she died in protest of their failure to keep her here longer…and then to bring her back after she’d gone.
I remember the last two weeks pretty vividly, a mixture of holiday cheer, watching her chest wondering if this breath would be the last, loving and even festive visits from friends and family, and pre-passing funeral preparations. I remember being on the floor of my dining room on December 2 and hearing my youngest sister who lay next to our mother say, “I don’t think she’s breathing!” And, that was it. I was prepared. A few tears and then all of my planning became action. I knew who to call, what to do, what to say. I had planned almost everything—which nurse to call to confirm the time of death, the number of the local funeral home that would remove and transfer her body from here to Cleveland. I had developed my phone tree and drafted a beautiful email to share the difficult news with the people who loved her.
What I hadn’t prepared for was the site of her empty bed echoing throughout my home making her transition more real than even the site of her lifeless body wearing the disguise of peaceful sleep. I wasn’t ready for the emptiness. But, my handle-it instincts kicked in, and I quickly solved the problem with the only response I could—more emptiness. I pleadingly ordered my uncles to dismantle the bed. Take. It. Down. Remove every suggestion that she ever slept here. Immediately.
And, then, I did the same with all things multiple myeloma, the disease that took her life. Although I have participated in Relay for Life every year since then, I have always been resistant, adamantly opposed even, to having anything to do with anything to do with that disease specifically. But still, I want it gone.
We were blessed. When my mother was diagnosed at 45, the best prognosis for most people was 24 months…maybe. And, although it was considered a terminal disease, my mother was able to borrow another decade plus a little and to spend several years of it with no signs of the disease. That gift was the result of her young age and good health at diagnosis, divine grace coupled with clinical trials, new medications and even old, previously banned ones that have now made multiple myeloma a treatable, manageable disease. So, I know the power of research. I know that if my mother had relapsed even one year earlier, we wouldn’t have gotten the plus. The first treatment she received after her relapse had been banned in this country and had just been approved for treatment of this disease. The second, which, as these things go may have also impaired her health further, was new and had just been made available due to the great success in trials.
So, both my grieving and my healing continue with this post, as I opt not to delete and re-unsubscribe from the MMRF mailing list and instead become a Facebook fan. Eradicating all things multiple myeloma from my inbox did not have the desired effect of changing the facts of my mother’s illness and death. I, however, am now in a place where I can change my story about those facts and create a space in both my email account, my heart and my budget to embrace the work that the foundation is doing to give other families some plus-time with their loved ones and to ultimately find a cure.
To learn more about the MMRF and the work they're doing and/or to donate and support this research, visit: www.themmrf.org.
Postscript:
I actually wrote this post on Tuesday morning. The first words were originally, “This Thursday marks…” That night, my son’s father called to tell me that a dear friend, several years younger than me, is presenting with multiple myeloma. That was affirmation that my healing was right on schedule.
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