I am terrified at the thought of even doing this, but I feel like I need to proceed; not only because I feel like this is an invaluable way for me to cope with my grief and loss, but to grow from my experiences. Honestly, if you were to tell me that I’d be putting myself out there like this, before I had to deal with the hand I’d been dealt, I would’ve said you were a few bricks short of a load! But alas, here I am, terrified but taking the step.
I have no idea where to truly start, other than to start with today. It will probably be confusing, jumping back and forth, but I promise to aim for as much clarity as I can muster. I must warn you, I am obviously grieving and attempting to work things out. I knew that this day would come, and thought I was prepared, but I certainly had no idea what it was truly going to be like until it happened.
It’s been a few weeks since my sister’s passing and I am still attempting to cope with her loss. She was a huge part of my entire life. She was my compass, my confidant, best friend in the whole wide world and unquestionably without a doubt, my partner in crime and future cell mate LOL. I helped her get through labor and delivery for both of her kids, so we also had a very special bond bound together by her children. She was amazing and I’ll never be able to thank her for allowing me to experience one of the most pivotal and private moments of her life, and sharing in her joy as a new mom. This thought is a constant in my mind.
I replay it daily, maybe because it was difficult to see her in that much pain when she’d had her kids and I equate this pain level with her painful and drawn out exit. It’s the gauge I use for my own understanding. It makes me sick just thinking about it. At least labor pains subside and are a prelude to the joy of holding your beautiful baby, that symbol of love and renewal. But cancer pain, that doesn’t lead to anything joyous. At the end of all of that pain, there’s no baby to hold and love, only a ‘soul’ and their love to let go of. At least that suffering ends, but a new one begins and this suffering has no expiration date and it holds the promise of being an unpredictable bag of radical swinging emotions.
I’m still haunted by my parent’s recollection of my sister’s final hours, as I wasn’t there. I had been going to visit in the evenings to ‘tuck her in’ at night. I didn’t want her to feel bad about us being with her, as she had always felt that way, scolding us about making a fuss and wasting our time being there with her throughout her cancer journey. She’d tell us to go home from the emergency room, the hospital, at home or wherever she was when she was down for the count. I’m certain she was constantly pissed but secretly happy we would stay.
I had been waiting to hear from my mom as to when I should head in to see her that evening. She passed before I got to see her that day and I couldn’t bring myself to go and see her after she was gone. It had been difficult enough for me to see her each day during her obvious decline. You could see the cancer visibly eating her body daily. She was practically skeletal, aside from her grotesquely swollen abdomen. She looked like she was nine months pregnant, due to the cancer that had infiltrated her liver and the rapid filling of her abdominal cavity with malignant ascites. I will never forget the day she showed me the mottled skin covering her stomach just a few weeks before she died. I knew she didn’t have much time then, and that sick sinking feeling accompanies the memory. After she was gone, I just didn’t want my mind to constantly go back to seeing her lifeless body as my last memory of her. And yet, I am now going back and forth on my decision not to see her in that state. I know that the choice I made was probably better for me in the long run, but it’s my nature to keep kicking myself for that decision.
What I am I left with, is the memory of kissing her forehead and saying I love you and that I’d see her tomorrow. Her response as we left the bed was an urgent,”I love you. I love you.” She looked almost panicky while looking directly into each of our eyes as she said it and then turned her head and nodded off. She made sure we knew her love. She was only in hospice four days. Each evening when we’d visit, she’d wait until after we left to take the anxiety meds they’d give her so she could be somewhat awake for our visit. She was frustrated that the meds they were giving her were adding to her drowsiness…if only I knew then what I know now.
I remember looking behind me as I left her room for the very last time. Her frail body laying in the bed as she fell asleep. It was weird because as my family and I got into our car to leave, I felt peace. I felt good after I left her that evening. All we did was sit silently beside her bed for an hour while she slept. That’s all I wanted to do. I wanted to spend every moment beside her but I also wanted guilt-free space for her and time for the rest of my family to visit too. I also needed to be present at home with my family, in preparation for what was to come. Not an easy balancing act. We didn’t know how long she was going to be in hospice, days, weeks, no one knew. I knew I was already exhausted and could barely deal with the basics each day.
We were ‘sold’ on the idea that she’d eventually slip into a coma and we were under the impression it could be much longer before that happened. I knew in my heart, it wasn’t going to be weeks, I ‘bought’ the suggestion, but I knew. If only I had trusted my gut. The coma was the kind of death I had desperately hoped for because I also knew that there were other more painful ways that she could experience. That hope made me blind and ignorant.
Lea has always been there for me throughout my life. She was especially there for me, when my youngest daughter was diagnosed and subsequently treated for her cancer. She shaved her head, as well as both of her kids’ and spouse’s heads in a show of solidarity over Skype while we shaved ours. The beautiful hair she never had the chance to grow back is something I will never forget, especially since she loved to do her hair and makeup. She was a stylist by trade, a damn good one at that (I was so proud of her)! And that’s just one time she was there for me! I’ve had a few things not go as planned in my life, and as always, my sister was always there. Although she and I were different ages, (I am the eldest…I openly admit it LOL) and we ran completely different lives, we were always there for one another and spent whatever time we could together. When I needed a photo for her obituary, I was shocked at what I saw. I went through 15 years worth of photos, and nearly every batch of photos I took while visiting with family, she was either a focal point or mulling in the background in every single batch, every single time.
I’d thought I’d foreseen a summer and subsequent fall filled with trips to the hospital for chemo, whereby I’d sit with her and have our deep discussions about death, treatment, the failure thereof and our options. There would also be the usual banter that included made up stories of stupid shit we should invent and patent due to a necessity we’d had or the embarrassing stories we’d endured navigating life and the many new things we’d encountered as moms. I truly didn’t see this coming. We knew she was on bought time, but not this little. The precious things we’d all taken for granted were violently yanked out from underneath us in a flash. Harsh life lesson number one, that no one ever truly takes advantage of, but I know and now understand fully…you never know what’s coming, so take advantage of whatever it is that presents itself.
I’ve never experienced pain like this before. I’ve lost people throughout my life, but this is something entirely different. I’m sure many of you can attest to the new type of pain that I have been struggling with. It’s nothing like labor pains, or illness/injury pain, or the loss of a distant acquaintance, or losing out on something you truly want. This is the pain of finality, never again will I have my sister. The one who undoubtedly understood me, who knew exactly what I was feeling. The one with the same sick sense of humor, whereby it doesn’t need an explanation because she gets it. My greatest critic, the one who kept me honest in my path on my journey. A ‘connection point’, anchoring me to the rest of my family. It’s a part of me that’s gone. A huge piece of me. I miss you Lea. I miss my ‘old’ life, the one where this shitty disease and horrible way of life while managing it, wasn’t even a thought in my mind. Blissfully oblivious.
I never even put much thought into this, it’s sort of funny actually. The learning curve back into ‘normalcy’, it’s steep…like really steep LOL. You’d think that after nearly 4 years of chaos, that a return to normal life would be fairly simple. I think I can relate on some level with people who end up leaving their lives for an amount of time, a deployed solider perhaps, that arrive back home thinking that you’re just going to jump right back into the life you had left. It’s like when you leave, you hit the pause button (wouldn’t that be an awesome feature to have). But once you get back, you realize that everyone around you and the circumstances and everything has changed. Obviously, I wasn’t prepared for those changes despite having this knowledge in advance. The expectations of that old life are long gone and there’s a discovery and adjustment period to figure out how the hell you fit into this picture. There’s also others around you who may feel that it’s just life as usual again right after and that’s hard to adjust to. I can say that I’m just not there yet. I know I can’t rush the process, but I tend to have zero patience for myself. I am constantly having to remind myself that this will take time. Grounding is a common theme for me as of late.
I knew things would be different…who am I kidding, I don’t even remember how the hell I lived before this LOL! The hours I’ve spent reading and researching the last four years alone, only one aspect of what I had been doing with my time, has thrown me for a loop. I no longer have to sit and read for hours on end daily. Suddenly, I have all of this time. And to be honest, I don’t think that having this much idle time is good for me. So now I find that I’ve been filling it with productive/necessary tasks and healing projects. I still sit and think, which then leads me to dealing with the thoughts and emotions that hit. All of this time, for me, is a newfound freedom. When I think of it that way, it makes me sick. I realize that the only reason I have that freedom is because she’s gone. And that leads into my feelings of inadequacy, that I didn’t find the information we needed to keep her alive. I failed. I know, I can’t keep beating myself up, but it’s a vicious cycle. Obviously, I’m still dealing with everything and will be for a while I’m afraid.
Memories of the past, new memories that hadn’t been made yet, and the retelling of them in the even more distant future, gone. That is a substantial loss. And if I must admit, with the thoughts and realizations that I’ve had about this world and what’s been going on within it, it’s a very lonely time for me. She came to every single one of the same conclusions I had much too late, but in her final months, I finally had someone in my life who really got the ‘new’ me.
I don’t expect any kind of relief any time soon, and know that one day life will get back to ‘normal’. I hang on to that hope, because it’s been a very long time since I’ve experienced ‘normal’. I know that my new ‘normal’ life will have major enhancements and benefits but my old ‘normal’ life will also be mourned. Life is a luxury I no longer take for granted and I feel that there is still a bright future ahead despite the sorrows of today. For the time being, I must learn to be patient and keep moving forward each day. I know that’s what she would’ve wanted for me, as that’s what I would’ve wanted for her, if the roles were reversed.