Today is a Tuesday. It's the 16th of October. It's a beautiful, breezy fall day; my favorite kind, the kind where the sun graces the leaves as the wind steals them from the trees and you find yourself reminiscing about your childhood, remembering what it felt like to jump into a freshly raked pile of leaves and lose yourself in the crunch and the color and the wet smell of the earth.
And as of today, Tuesday, the 16th of October, it has been exactly one month since my mom died.
Although so many of you have offered your support via phone, text, e-mail, and in person, and I've even cried on a few of your shoulders, I haven't been able to open up yet about how I'm doing - how I'm
really doing - and what the last month has been like for me, but the strangest thing happened today.
I woke up wanting to tell my story.
I wanted to tell everyone; the woman who served my coffee at Starbucks, the crew who delivered my new mattress, the old man I passed in the grocery store. I wanted to tell them all, and I want to tell you, because I want to believe that, if I do, it might make it hurt a little bit less. It might make you appreciate the good things in life just a little bit more, because, let's face it, couldn't we all stand to be just a little bit more grateful? And it might cause you to think twice before you get angry or speak harshly towards another person, because you never know what kind of hell they might be going through. For beyond all the grief and the pain of the last month, the one thing that I have finally,
finally learned is the incomporable value of even the smallest, most miniscule bit of kindness.
So here goes.
I got drunk the night before my mom died. I was drunk on a Monday night and it was completely irresponsible, but it was exactly what I needed at that moment because I was happy. That's what I remember. I remember being happy, because that was something that hadn't been coming easily to me at the time. Two weeks earlier on an abnormally cold and rainy Tuesday at the beginning of September, we had gone to my mom's oncologist's office with her - my sister, my aunt, my grandma and I - and learned that her liver was failing. After a six year fight with breast cancer (and an almost 20 year struggle with other various diseases and spinal issues) that metasticized to her lungs, her stomach, her spine, her liver, and virtually every other part of her, her body was finally shutting down. Her doctor offered chemo as an option, but the chemo would have given her at the very most six months, and a shitty six months at that thanks to the side effects. So, after some discussion, it was decided that it was time to make her comfortable until the end.
Her doctor gave her 1-3 months to live. My sister cried. So did my grandma. I didn't feel anything. Those of you who know me well know that my mom has been sick most of my life; her death was an inevitability, and she'd 'cried wolf' about it so many times during the course of my life so that, when I finally heard that it was actually, really, seriously happening, and soon, it was still kind of a 'shoulder shrug' moment. An
"Ok, sounds good. Thanks for the info," type of thing. My logical mind heard and understood what was happening, but 17 years of experience was like,
"Whatever. She'll be fine. She always is. I'll believe it when I see it." My mom didn't cry. She didn't even seem upset. She seemed... resigned. More worried about being in pain at the end than anything else. Her doctor assured her that he wouldn't let that happen, and to his credit, he didn't. I'll always be thankful to him for that. "I'm going to make it until Christmas," my mom said. "One last Christmas." And I believed her.
I remember walking out of the doctor's office. My sister was videotaping, which was ridiculous, but so fitting, because my mom spent most of her life with a camera attached to her face, trying to document every seemingly inconsequential moment. I don't remember what we were talking about; all I remember was feeling this desperate need to escape. When I finally got into my car and began to drive back to work, I wasn't thinking about losing my mom and how hard it would be; instead, I was worrying about how the hell we were going to take care of her until then. She was on Medicare, with no life insurance and no money to speak of, her boyfriend lived two hours away, my sister and I both worked full-time jobs, and my grandparents had already been running themselves into the ground trying to take care of her. She had said herself that she was going to make it until Christmas. I planned to deal with the logistics of the situation first; I had plenty of time to prepare and grieve.
My sister and I called a family meeting that Friday. My grandparents, my mom's brothers and sisters, and Tom all came together and came up with a care plan; she wanted to die at home, not in hospice, so we would each stay with her and take care of her one night a week, and Medicare would provide in-home hospice care during the day. We met with the hospice nurse the next day to sign the paperwork, and I think we all struggled a little bit when the nurse so clearly and explicitly explained that, once we were signed up, there would be no life-prolonging measures taken or allowed in terms of my mom's care. It almost broke my heart when my grandpa argued with her about that, asking if we could pay for testing out of our own pocket if we wanted it.
Tom and I had spent the earlier part of that day cleaning up the apartment and shopping for food with my mom, her last time out in public. She was a mess; barely lucid, but stubborn as always and very hard to manage. She was demanding cheesecake from Simma's, one of her favorites, and every time she opened her eyes during the car ride, she asked why we weren't headed towards Simma's. I told her it was closed, even though it wasn't - we just didn't have time to get there - and she pulled out her phone and insisted I give her the number so she could call and verify that herself. I'll give you one guess where I got my stubbornness from... :) It would have been funny if it wasn't so very, very sad - to see my mom so out of it that she couldn't even finish her sentences. But, we picked up some of her favorite food, including Simma's cheesecake, from Sendik's, and after the hospice meeting, we spent what would be our last time all together, eating dinner and talking for hours in my mom's living room. I snapped this picture on a whim, and I'm so glad I did. I'm so, so glad that we all had this one last moment together.
My sister took over her care, and spent as much time with her as she could. Me? I ran errands and made phone calls and tried to get things in order. I just wanted my t's crossed and my i's dotted. I wanted to go through her paperwork, cancel her accounts, figure out her finances. Despite my emotional nature, I'm action-oriented. I wanted to talk to my mom, but she wasn't my mom anymore; she was barely lucid enough to tell me her secret caramel corn recipe, which I all but dragged out of her over the course of a 20 minute phone call not long before she died. I wanted to DO something. I wanted to feel useful. I wanted to be busy. So, that's what I did. I talked to my dad, I talked to lawyers, I researched her financial situation, I filed FMLA paperwork for myself so I could leave work if I needed to, and I planned a family party, one last family party, one of my mom's favorite things in the world, for Sunday the 23rd of September. My uncle Jim bought a ticket for my cousin Rita to fly in, and my aunt Andi bought a ticket for my cousin Brianna to fly in, so we could all be together one last time, celebrating as a family.
I'd chosen to spend Tuesday nights with her, so my first overnight was a week after the doctor appointment. I'd been dreading it; taking care of my mom was normally a challenge, as she tended to be very picky and usually ungrateful, and I was also feeling panicky and unsettled about her diagnosis. I was really struggling to wrap my head around the fact that she was dying, and I didn't want to face it, didn't want to be around it. I wanted to pretend that everything was fine, that I could call or text her whenever I wanted, and that maybe we'd catch a movie or go to dinner at Maggiano's the next weekend... even though those days had ended months before. When I got there, I told her I loved her, she told me she loved me, and then she fell asleep, and was still sleeping when I left the next morning. I was there from 7 pm to 7 am, and then my grandparents relieved me so I could go to work. I remember thinking,
"That wasn't so bad. I can do this once a week." I didn't know at the time that I wouldn't have to.
I got a call from my grandma the next day, Thursday; she told me that my mom wasn't doing well, and that an ambulance was coming to take her out to hospice in Oconomowoc. We still didn't have a will for her at that point, so I created one online and rushed from work to her house so she could sign it before she left, just in case. My mom, who had always been able to self-administer medication no matter how sick or out of it she was, had neglected to take her meds for two days, and because of the amount of medicine she normally took on a daily basis, it had sent her into severe withdrawal. Tom left work in the middle of the day to be with her; I watched him tell her over and over she was going to be okay while begging the ambulance staff to do something to help her, to fix her - something that they couldn't do since she was under end of life care - and it made me feel so sick that when I finally left the house, I threw up outside of my car. I took the rest of that day off.
They took her off to hospice, and my sister and I began the process of trying to figure out how we were going to pay for her care. Medicare would only cover her until she was stable; after that, it was $300 a day for room and board. We filled out an application for community assistance, which was denied that same day. My sister asked point blank where we were supposed to take our mom to die, and the person told us in not so many words that we should just keep her there, and when she died, we wouldn't be responsible for the bill. Yet another thing that, although we didn't know it at the time, we didn't have to worry about, because she never did stabilize.
Friday night we had another family meeting, this time without my mom, who was still out in hospice, to decide what we were going to do about her care. We all decided that, despite the fact that she had wanted to die at home, there was no way we could get her the care she needed in order to make that a possibility. We also decided that it was time to get her moved out of her apartment so we didn't have to be responsible for October's rent... another financial burden we wanted to try to avoid. I went back to the apartment by myself all day on Saturday to go through her things - the Saturday that my sister and I had planned to take my mom to the Farmer's Market at the Capitol in Madison during a Badger gameday, something she'd never gotten to experience. Instead, I spent it throwing away and boxing up things she'd never need anymore while she laid in bed in a hospice in Oconomowoc.
My mom, who had been lucid that afternoon, was completely out of it by Saturday night, but my sister and I stayed with her that night, ate popcorn, and watched 'Grease', one of her favorite movies. The next morning, the nurses explained that my mom would no longer regain any type of lucidity - that we were nearing the end, and it wouldn't be more than a few days to a week. My sister left me alone with my mom to say goodbye, since I was meeting my uncles and my friend to continue to clean and box up her apartment that afternoon. I didn't know what to say. I didn't know if she could hear me - they told me that she could, but I didn't know if I believed them. And it wasn't my mom anymore - my mom had been gone for a long time. For me, my mom had been gone since she'd stopped responding to my texts back in early August. We'd always kept in touch via text, almost every day, and losing that communication was, and is, one of the biggest losses I've had to face. I never really felt alone, because she was always just a text away. Not having that anymore was, and is, so hard. I told her I loved her. I told her it was ok to go, to finally be out of pain. I told her that my sister and I would take care of each other, and that I promised to use everything she had taught me to get healthy. And I hugged her. And I left. It was the last time I would see her alive.
I went to work the next day and burst into tears as soon as I walked in the door. I literally didn't know what to do with myself; I couldn't concentrate on anything, I couldn't think about anything except my mom, I hadn't been sleeping, and I'd been going non-stop trying to distract myself from the reality of the situation. Somehow, I made it through the day, with the plan to take Tuesday off to spend at the hospice with my mom, and take things one day at a time from there. Some good friends of mine bought me a bottle of vodka as a stress-reliever, and it was exactly what I needed. So I called a friend of mine, and we drank, and then went out to a bar and drank, and then came back home and drank even more. I don't remember the last time I'd been that drunk; the room was spinning and everything was blurry around the edges but mostly, I just felt happy. I felt free. I felt okay.
I went to bed at 11 pm that Monday night. My sister woke me up at 2 am and told me that our mom had died. I'll never forget that moment. Past the blinding headache from all the alcohol, it was just - empty. Everything was empty. I got out of bed, and I just stood there, completely lost. She told me she was going to pick up our grandma, who had been with my mom when she passed. I went with her. I didn't know what else to do.
That night was one of the most awful nights of my life. I felt sick from all the alcohol. I felt so guilty, because I'd gotten drunk instead of going to visit my mom that night, even though, at the time, forgetting was something I so desperately needed to do. And I felt this weird combination of numb and panic and sadness and disbelief because although my world had shifted on its axis and was spinning in a new direction, it was still exactly the same. I kept wondering how the sun could still rise, how people could still get up and go to work and eat and breathe and live and be normal when I felt like I'd never know what it was like to be normal again. I wanted to see her one last time, so I did, and even then, when she was lying there, finally peaceful, I didn't believe it. I couldn't believe it. She'd been telling us for 20 years that she was dying. I guess I never actually believed that she would.
I got back home around 5 am and posted something on Facebook about my mom passing away, then laid back down in bed and stared at the wall and proceeded to check my Facebook wall every few minutes or so. Isn't that crazy? That's what got me through those first few hours, the outpouring of love from family and friends. I didn't even care if the comments and notes were from people who I hadn't spoken to in years, who were more acquaintances than friends. I just wanted to know that I was loved. That someone cared. That I wasn't alone. Three hours later, I dragged myself out of bed and began the process of planning the funeral.
That entire week was a blur. I didn't cry much. I didn't even cry at the funeral. I kept busy. When I wasn't busy, I panicked, so I just... stayed busy. Xanax was my best friend, and Bennadryl, which was the only way I was able to sleep. The date of the family party that I'd planned became the date of the funeral. My sister and I ordered flowers, made picture boards, picked out an urn, and made so many other decisions that twenty-something year old women should never, ever have to make for their mothers. I stopped eating. I spent time with friends and family. I wrote like hell in my journal, a gift that couldn't have come at a better time from someone who means a lot to me. I reached out to people, and I talked to people, but I never really
spoke. I'd say all the things you're supposed to say when you're greiving, while inside, I was desperate for comfort and affection and friendship but unable to put myself out there enough to accept it, because I had to be strong. I had to be okay. I had to take care of myself, because the one person who'd always been there for me, always, no holds barred, had just left me. My mom was gone. And no one can, or will, ever love you the way that your mother does
The day after the funeral, we finished cleaning out my mom's apartment and locked the door for the last time. Two days after that, I went back to work. A week after that, I began to travel again. My friends would comment on how well I was doing, how proud they were of how strong I was, and I would smile that smile that doesn't reach my eyes and thank them while at the same time wishing I could just burst into tears. That was the problem. I couldn't cry. I just. Couldn't. Cry. And if you're not crying, you're okay. I learned that very quickly. It was too difficult for me to reach out, too difficult for me to tell them otherwise. I have come close to opening up to some of my closest friends, who have been so kind and supportive and know me well enough to call me on the bullshit facade that I put up, but every time I would call them crying, as soon as we'd start talking, I'd stop, and say I'd be fine, and either make a joke to change the subject or get off the phone. Because I didn't even know how to deal with all of this; how could I expect anyone else to take it on, no matter how much they cared?
Grief is such a funny thing. It's like a black hole; when I'm experiencing it, I feel alone, surrounded by empty nothingness, even though so many people are trying to reach in to pull me up. And when I'm on the outside, witnessing others going through it, I feel terrified of being sucked into that gaping chasm with them. I'd been dancing on the edge of it since that doctor appointment on September 4th because grief is just a scary thing for me; it feels endless and all-encompassing and inescapable, but I knew it would catch up to me one day, and it did, just last weekend, at perhaps one of the most inopportune, inappropriate times. That's just the way it goes, I guess. I cried. I cried long, and I cried hard, so fucking hard that I couldn't breathe, and then I cried more, and now I feel like I'll never stop.
Since I finally broke, everything reminds me of her. All I see everywhere are mothers and daughters, shopping and laughing and fighting and loving and I can't help but think, every single time,
'I'll never have that again.' I'll never be able to talk to my mom about boy problems. I won't be able to call her in the middle of the night when I'm sick. She won't be there when I get married. She won't be there when I have kids. Regardless of the past, and some of the not-so-great memories, that bond between mother and daughter is irreplaceable, and losing it is monumental. It's devestating. It's a sorrow that can't be put into words. It's a sorrow that will stay with me for the rest of my life.
But.
I realized something today. I realized just how many gifts my mom has given me. The gift of life, of course, is the biggest gift of all. But she also taught me how to give. She taught me that my struggles with my weight don't define me. She had impeccable fashion sense, and although I'll never wear as much gold as she did (she was the only person I know who could pull that off) she passed that irreplaceable knowledge on to me. She taught me how to navigate an increasingly frustrating medical field, and how to fight to get the care that I need. She taught me the importance of taking ownership of your health, and how to be healthy in a world that is anything but. She taught me how to put on makeup, how to put my hair in a ponytail, how to tie my shoes, and how to heal a broken heart. (She was a big part of that healing process, but although she's no longer here physically, I know she will continue to be from heaven.) She taught me that I was beautiful. That I am worthy of love. That I can succeed at anything I put my mind to. She taught me to stand up for myself. She taught me hope. And even though we had some tumultuous years, she was always there to fight for me when I really needed her... and when I didn't even know that I did.
I am not okay. Right now, I am not okay. But I will be. I know I will never stop missing her, but I know it will eventually hurt less. And I know she's always with me. I'm just beginning the journey through my grief, and I want to thank all of you for being there for me along the way, and for telling me that it's okay to be sad, and it's okay to cry. Sometimes, I just need to be reminded that I don't always have to be strong. And for the record... hugs are always welcome.
