My upbringing is unusual. My grandmother adopted me as a baby and raised me on her own. She was a senior citizen and a single mom at the same time. She was my parent, inspiration, and best friend. My grandmother had the wittiest sense of humor and fiercest style of anyone I have ever met. Last year, ovarian cancer that spread to her lungs took out this tough, beautiful, old bird I adored so much.
I spent the last year of her life as her caretaker. On the night before my 31st birthday, I flew from my husband and home in Manhattan and rushed to a little town in Texas where I grew up. She had to get her lungs drained and hospice set up ASAP.
I stayed, and continued to grow up there over the next year, living with her as she was leaving me. I learned things that most people may not learn about taking care of an elderly parent until late in life. My adopted mother turned 80 while I was 31. The woman who always had the answers and wisdom I needed to sally forth through the fog of my youth, was now in need of guidance herself.
I still today replay the time I spent with her, asking God to tell me how I could have done better for her knowing what I know now. The problem with most books and blogs on death, aging, and cancer is that none are honest enough to tell the raw ugly truth about it. Authors speak in comforting metaphors that mislead and disappointed me more than they provided the practical help I needed.
As I look back and the heat and hurry of the many crises that arose during her caretaking dissipate, I can see more clearly the truths we exchanged together. I don’t know if I will have kids. If I do, I want them to be a little bit more informed than I was. So I’ve written a letter to my unborn child for when I transition from independence to dependence, life to death, in the hopes that I might ease the horror of this process of abandonment.
There are a few things I need you to know about the process of me leaving you. It will be hard and ugly and full of love. I will be unable to tell you how much I appreciate you, although I will still try, and that alone may break your heart. Here is a little bit about what I’m going through that whatever bullet-pointed pamphlets you’re leafing through won’t tell you.
You’ll have to trust in the love we’ve built, and adapt to the face it has now. It’s still there.
As I get sick, old, and die, I might scare you, say the wrong things, and push the limits of your love for me. I am writing this letter to you now to tell you things I won’t be able to when that time comes.
The look on your face tells me the truth.
Please remember, don’t let the look of fear in my face and eyes scare you – or hurt you. Don’t feel betrayed by my current state and my bodily expressions of it. I am feeling betrayed by my body, enough for the both of us. The only thing that is real to me now is the look on your face. It tells me the truth. It’s telling me if you’re mad at me, if you’re ignoring me, and how bad it all is when no one else will say so verbally. Meeting eyes with you is like gold in my world. It’s almost as important as your touch.
It is acknowledgement, respect, and connection – more important than any other currency in my new, fleeting body. It connects me back to who I was and where I’m going.
Please know that I may seem juvenile and oversensitive at this time. I may take you aback with hurt feelings from moods I’m intonating from you, but it’s because your presence during the fog of my transition is my lighthouse. Allow the mother that you know, the one before my disease ravaged my mind, to anchor you in these times.
I will complain like mad, tell you to go away and criticize everything you do. When I do this, please forgive me quickly. Much like a child who says to its mother to go away and that it hates her, it’s only from my temper control diminishing. My literal temperature is going up and down along with my heartbeat and blood pressure going all over the place. Not to mention that my meds will make me out of sorts. I will make World War III over the way you presented my pills to me, or cut you deep with a snipe about how you never have done this or that right. I swear on my soul that I don’t mean it. I promise that I will feel guilty, scared and insecure about my tantrum five minutes later and want nothing more than you to come sit by me and speak softly – about anything.
Don’t make me have to ask for help with the basics – especially like food and bathing. Preempt me. It preserves my dignity. And for God’s sake, don’t rush me. I’m trying harder than ever to be strong and efficient for us both.
I will hurt you. I will hurt me. I will break and misplace things. You’re going to prepare food for me that you don’t want to eat. You’ll see me naked.
When I don’t have the strength or mobility to dress myself, I will surprise you with the wherewithal to complain about the outfit you’ve chosen for me. You may have to deal with blood, feces, and urine. I trust that you know how dehumanizing it is for me. You might have to move my limbs when I can’t or even pick me up. I know that it’s an assault on all of your senses and your image of me, of yourself, of life. Trauma.
The less embarrassed you are about these ugly things, the less I will be.
I will do and say things that make no sense and are completely out of my character, with a conviction strong enough to make you think you’re the one who’s out of touch. By the way, it will scare the hell out of you to see me doing so. I need you so desperately to gently guide me back to somewhere safe – be it a room, or a state of mind.
I may grab a book and head straight for the door at sunup for a walk when I’m too blind from drugs to read, and too attached to an oxygen cord to last long outside without it. Help me. My mind is flashing in old spots and closing out in others. Love me. I’m scared and confused why what I did was wrong.
I might not recognize you. This has nothing to do with you. I may still be alive physically, but this will happen as I drift off into the horizon. I may say, “Excuse me, ma’am, I need someone to help me.” And you’re right there with open arms and a broken heart, my struggle with our long goodbye crushing us both.
Drink me in even though it’s frightful.
This is a time when you and I need to be in full warrior mode. Shield yourself from my patheticness with pride. Pride! I am a queen now, making her way toward majesty, to existing in memory, and in the soil, and you are my guide. Who else could be more special in the world right now than you.
My appearance will decline (but help me avoid that, will you?). Please look for the spark you bring to my eyes until they no longer open. See my radiance through the shell that I am. I am your blood, your DNA, and this is one of the last times you can see me in this life. Drink me in even though it’s frightful. Later you’ll be glad you did.
You’ll see me reaching for invisible things as I get closer to dying. Reaching and grasping for my mother, the same way you’ll likely do for me as your time of death approaches. You may be extending your arms open for me, even now in wait.
Searching for Me
Many times you will ask me and I will promise to always be with you no matter what after I die. We will promise that even when I die, I will be in your heart always and we’ll be connected until the end of time. You may feel like it’s okay to let me go because of the gravity of this promise. Don’t be disappointed when that isn’t what you expect. After all this you will several times wake up angry that I didn’t keep my end of the deal. Being with you always isn’t what you counted on it looking like – far less literal. The amount of imagination it takes to make it the way you wanted will exhaust and torture you. It will take time to understand how I am with you always.
You will search for me in all kinds of strange places. You’ll think you see me in crowds and in restaurants. Now get ready for this, you’ll look for me in subway grates, in the closet, in the sky, maybe even under the bed. It will be hard for you to turn off the itch that orients your world – my presence.
You’ll have dreams, good and bad. Don’t let the bad ones redefine what we had. Just let them do their job of letting me go.
You will feel overwhelmed, alone, during and after my death. Your loneliness will not get any help from the unseasoned spirits of friends in your life. People may treat you like you’re from Mars at the very time you need them most. The pain and hardship you’re going through alienates you from them. It’s okay. Don’t be ashamed of who you are and what your life is, was, ours, or mine. Their day to grow up will come. Don’t let anyone make you feel insecure about your decisions – even me.
If I have motivated you to stay on course in your life, after I die, you may want to do things you wouldn’t normally do because you feel like I’m not looking. I can’t be there to give you “the look” when you’re acting a fool, and I can’t be there to tell you how proud I am whether you are or aren’t. I need you to think of the way I loved you as practice. You must now give yourself the love, guidance and compassion I once showered you with. You must be the love you need. It’s in your bones. I’m in your bones, not the closet or the subway. It’s just going to take a lot of practice to dance on your own now. But it’s there, baby.
Forgive me and yourself, and you will find your way. Don’t rush.