Hello and welcome to the Hopeful Pessimist! My name is Ali and I am just a human who lives on this crazy planet…like anyone else. I am very fortunate to say the following things about my life. I am married to the most hopelessly romantic and supportive human I’ve ever met named Clem, and with him, we have two inspiring and amazing daughters named Lola and Caelan. I have a dark sense of humor and thrive on sarcasm and I tend to cuss a lot LOL! Consider yourself forewarned that I do drop some colorful words to accentuate my point! I am often completely misunderstood, which is why this section is lengthy, so my apologies! I am a realist. I believe in honesty and truth and I feel that sometimes just putting it out there in the raw is necessary for understanding, perception and perspective. And now, a little history!
Where shall I begin…ah yes…our life! Our life (of course) didn’t follow a ‘conventional’ path, otherwise, I wouldn’t be here writing about it! We’ve had the usual things happen that many families face, and then there are ‘those other things’ that we’ve had to navigate. Of course, many people deal with some sort of financial issue at some point in their lives, so that’s a given. We’ve dealt with fertility issues (I see many dealing with this and I often wonder why so many of us do, don’t you?), luckily we managed to get two kids out of the deal, and naturally to boot.
Shortly after throwing in the towel after another three or so year battle of trying to have a third child, we were blindsided by having to fight for our youngest daughter’s life. At the age of 6, she developed a form of Non-Hodgkin’s Lymphoma. A whirlwind diagnosis (thankfully stage one), we entered the world of pediatric oncology for a very brief but chaotic stint (this type of NHL was a hit it hard, fast and often regimen). I believe we were immersed for only 5 months, from the time we discovered something wasn’t right, to the time she finished treatment. I cannot even begin to explain ‘the who, the what, the where, the when, the why or the how’ we managed in that time, but we did. A ‘community’ within our community formed, mainly consisting of moms, who worked selflessly and tirelessly to give us the ultimate gift of time, which saw us through. I will never be able to thank them enough and look forward to bringing to light the story of how this ‘community’ kept us afloat. I have been criticized for the way I dealt with my child having cancer, but I did the best that I could in that time for my family. In the end, we all survived and I feel we became and are continuing to become more compassionate human beings for it.
I am sorry to say, that our string of ‘things’ doesn’t end there. I know, you probably feel like this was ripped from the plot of some horror tear jerker combo movie. Only two months after Caelan was given a ‘clean’ bill of health, and we were on our way to healing and rebuilding the wreckage that was our life, my younger sister, Lea, was diagnosed with stage 4 lung cancer. This type of cancer seems to be making a meal out of young, non-smoking people, it’s what the medical industry calls an EGFR mutation. My sister did smoke on and off for maybe 7 years combined, but she certainly wasn’t a chain-smoker. I think she was something along the lines of a pack or so a week. She did work as a server in a bar many years ago, when smoking was still allowed inside establishments, but that was a different life a long time ago. No matter, it was something none of us saw coming.
Lea was a young mom with two beautiful kids, who was a compassionate and intelligent, humble human being. At diagnosis, her children were just one and 3. We nearly lost her last summer (2018) when her treatment failed, but she managed to rally back, not to complete recovery status, but damn close. Her cancer decided to start ‘exploding’ again late last year after a doctor ‘thought’ she had a ‘rare’ condition and pushed for a rarely performed contrast filled scan that seemed to jump start the process all over again, resulting in her passing only a few weeks ago. She was a young 36 years old, her children 3 (almost 4) and 6.
Once Lea was diagnosed, she moved her family nearly four hours away from her home to be closer to treatment, which also happened to be the community in which Clem and I reside. Clem and I had been living without family close by since we were married nearly 20 years ago. We quickly became caregivers to Lea, helping her with childcare, taking her to appointments, doing tons of research and providing support in every way that we could. I relished in every moment she lived here, taking as much time as I could to be with her without imposing too much. We got to go out shopping and have lunch dates on occasion. We were privileged to Sunday dinners, many of the things Clem and I missed without having family close by. We lost more than just a sister, it was also a huge part of the joy in our life, family.
I have a story to tell, everyone does. It’s the awareness and discoveries that have made me come to realize, that I should put it out there. Lea encouraged me to do this. She was supposed to write something for me, to put out there for others in the same situation before her passing. It’s sad to think, we will never get to read what she had to say now that she’s gone. She was always there for anyone who reached out to her for information or support, even in her final weeks. She was fearless and relentless, looking for anything to help her survive. I probably would’ve hid in my house, not wanting to talk to anyone, wallowing in my own self-pity, but not Lea. She was selfless and amazing. Her efforts were not rewarded by way of extension of her life, but she has inspired myself and others in ways never imagined. She went out on her own two feet, still questioning what we call ‘modern medicine’ and ‘standard of care’ and unwavering in her convictions that we can do better by educating and advocating for ourselves and others and challenging this faulty system. A huge dose of humanity, transparency and compassion would be an excellent start.
Just as I had turned to the ‘ye olde Google machine’ to read about experiences from people…real people, to prepare and educate myself for my child’s upcoming battle with cancer (there was very little information at the time), for validation in dealing with the horrible empty feelings of infertility, and the information I’d desperately seek for my dying sister, I hope to contribute to someone’s journey. I have completely changed my thinking and my stances on many topics after educating myself and critically thinking, which lead to me questioning whether I was a quack. My sister came to those same realizations, much too late, and reaffirmed that indeed, I wasn’t crazy. I continually read and occasionally run into people who have arrived at some of the same conclusions as I, which is shocking, as they are healthcare workers themselves. We need to start talking about this. I think we can all agree that all people’s lives are important and that humane, transparent, respectful and dignified treatment should be the number one goal, not greed from money, power, and control.
I have become someone I no longer recognize, and that’s not a bad thing. My life has drastically changed and for the first time, I have clarity and direction. I know that what I put out there may be deeply personal, but I’ve found solace in reading the stories of others willing to share their thoughts and feelings openly about their journey in life. I’ve never reached out, but just reading and knowing that someone else out there had gone through or was going through the same things, brought me comfort in ways I couldn’t imagine. I am forever grateful, and hope that these types of forums and platforms continue to be available to everyone seeking knowledge and affirmation.
This is my life as I try to re-establish and discover myself, my journey to move forward after life threw me a few curve balls. I’m not perfect and neither is my life. I’ve dealt with things I never thought I’d ever deal with and have managed to survive and become more compassionate and empathetic. I’m not here to put people down in any way, I believe wholeheartedly in kindness, but I acknowledge that there certainly needs to be some major changes in this world after everything I’ve witnessed and experienced. My hope, is that I can get someone to think about the things I am writing about and help bring it out into the open to facilitate positive change.
I am not educated to the gills and beyond, but I have an open mind, work very hard and think critically and question many issues without remorse. I am passionate about researching topics before choosing a side, and I pride myself on that. I try to be understanding and non-judgmental, often putting myself in other’s shoes, but I understand and know, that there is much more to it than that. What many don’t know about me, is that I used to have many of the ‘popular’ opinions prior to these past few years. I was just like you once. Read that again please, I was just like YOU once. Naturally, I am investigative and curious. Over time, I have learned that not everything is actually what it seems and that assuming does in fact, make you look stupid LOL! I’ve experienced this firsthand.
It is time consuming but rewarding for the knowledge that I gain with reading and I resent the fact that people assume that using the internet for research, community and information is a bad thing…remember what I said about assumption LOL?! You have to know where to look obviously, but it is a treasure trove of knowledge, and my bullshit detector goes off around the folks who assume I am reading ‘bad’ information.
My family and I have walked a mile or two, not as many as some, but we have experienced a somewhat unconventional life, if you will. If that doesn’t peak your curiosity into why I write what I write, I don’t know what will. I have my comedic days and my serious ones but mostly, I like to mull over what’s going on in the world and often wonder who the hell has truly lost their mind.
As you may notice, I have a thing for simple beauty, especially nature. Butterflies have been a common theme in our home since Caelan’s diagnosis. They inspire and uplift us everyday, bringing peace and hope for the future. I try and live as positively as possible now, but I do find it difficult at times. It’s hard not to be jaded and cynical but it also keeps me aware and present.
I’m certain that as you follow along, more about me will come to light, and that may be scary for some LOL…especially if you’re my husband! So without further ado, I’d like to welcome you to the proverbial shaken pickle jar that has come to symbolize my life.