Rage Runneth Over

I have really neglected my blog which upsets me because it is one of my major coping mechanisms to keep pushing forward in this insane world. Writing is a way to gauge my mental health. That aside from a busy work schedule due to my fulltime job, multiple freelance jobs, and volunteering for multiple events last month, I did not make the time to write out my thoughts.

I am sure I am not the only one who sometimes packs their schedules so much that it leaves no time for self-care. I know I intentionally did not make the time to write.

I did not want to feel.

I did not want to think.

I did not to acknowledge anything.

Today is the first time in a while where I am not obligated to attend a Zoom or run errands. I honestly do not want to write out the flood of thoughts that have been whirling in my head for the past few months. Writing it down will make it real.

The darkness.

The sadness.

The hurt.

The rage.

I am currently taking a six-week journaling class through a young adult cancer group to help process and release some of these thoughts and feelings. In this class, we are given a prompt and journal whatever feelings arise, then write feedback to what we wrote, and then share with the class. I took it last year and loved it. However, this year is different. Though I’ve had many truly amazing and exciting things happen this year (see my About page),the stress of living in a divided country where I’ve had racist encounters and racists comments directed toward me in places I thought were safe has thrown me into the sunken place – if you watched the Jordan Peel movie Get Out, you’ll understand that reference.

So, I wrote just a snippet about the rage that is boiling over within me and read it out loud to the class. There was the uncomfortable silence one gets when talking about race to a sea of white faces. The journaling therapist asked for everyone to hold some space for me and give words of support. Though I get what she was trying to do, it only made me more upset because no one was being authentic, except for the one guy in there who I talk to on a regular basis.

To this day, I remember posting my blog piece from last year called Cancer and Race in one of the lobular breast cancer groups. A white woman responded, “Race has no place in the cancer space.” I have never forgotten how her ignorant comment gut punched me. Then I think about talking with other people in other cancer organizations and one of the first things typically said is, “We work with black organizations that we can connect you with.” Why does my color make you so nervous and uncomfortable?

I am never seen as just a writer, speaker, cancer survivor, chronic illness haver, or patient advocate. Add the word Black in front of each one and that is how people see me first. Always.

If I want to be part of Black only groups or organizations, I know where to go. It is beyond insulting when a white person tries to segregate me, especially within the cancer space. Stop trying push square MEG into a round hole. It cannot be done. Ever.

Why can’t anyone see ME?

Until next time,

Warrior Megsie

Raging Against Myself

I’ve had many issues arise before my leave of absence from work and during that were beyond my control and have caused full blown panic attacks. I seem to need more and more time alone in pure silence to calm my thoughts and breathing. Then I thought about how I’m like that 90’s band name Raging Against the Machine. Only, I realized that I seem to be raging against myself.

Why?

Going through cancer while single has literally thrown me off the ledge. Let the rage fest begin.

I rage over constantly fighting my body to just function properly.

  • I can no longer just get up and go anymore. It takes so long to get ready in the mornings because of the chemo induced fibromyalgia and neuropathy. I never thought I would have to deal with this level of chronic pain on a daily basis. There is no real relief from it.

I rage that my life continues to be difficult without breaks. The hits never seem to cease.

  • Just when I think the pieces on my path are finally aligning, I get hit with another problem or infection that causes me to take three steps back instead of forward.

I rage over the never-ending medical bills post-cancer.

  • Why aren’t there more financial resources for post treatment? I found so many grants to help during my active treatment and one-year post but nothing now that I’m three years post. These are lifelong struggles which require many doctor appointments, tests and medications. The financial strain on a single income is suffocating.

I rage over being chronically single with zero strength to even ponder dating again.

  • I honestly don’t think I can ever date again. I have a zero-sex drive. I’m in freaking menopause. I don’t even want to be touched because it hurts thanks to the fibromyalgia. Plus, how I can date someone in the regular world ever again? It was hard enough pre-cancer to find a good fit at the right time. I can’t even have regular conversations because it always reverts to cancer.

I rage that any PTO from work has never been used to take a vacation and have fun. Instead, those days are used for doctor appointments, surgeries or sick days. 

  • How ironic that I finally had to request a leave of absence from work because my body literally gave up on me. I’ve been hit with an infection and chronic pain every single month since October 2018. No wonder I basically keeled over and couldn’t go on. Will my immune system ever be semi decent?

I rage over our healthcare system and having to fight the billing departments from multiple cancer centers and question or review charges.

  • The visceral stress from opening the mailbox and seeing a billing statement and/or invoice almost daily wears on me. Plus, I already pay such a high deductible. I don’t have the strength to work multiple jobs and gain multiple streams of income by myself. It takes everything I have to go work for 8-10 hours a day.

I rage over the hundreds of times I’ve had to advocate for myself to be heard with doctors.

  • I’ve been treated at multiple cancer centers and have seen multiple oncologists and specialists until I was finally heard. I’m sick of so many saying, “That doesn’t typically happen to cancer patients” or “I don’t think this pain is from your treatments.” When are these providers going to learn that every BODY is different? When will they realize they don’t fully understand the long-term side effects that stem from chemo and radiation?

I rage over those inside and outside cancer land who try to “fix” my chronic pain with essential oils, supplements and more unsolicited advice.

  • I’m disgusted by those who give unsolicited advice and think they have the cure to end my chronic pain or whatever else is going on. It’s like these people think I haven’t already tried many of the things they claim “cured” them. Why can’t I just talk about it? Why do I have to justify to non-medical people why I don’t want their unsolicited advice?

I rage over the family life I never knew I wanted and now can never have thanks to my cancer treatments and being medically induced into menopause years ahead of schedule.

  • When your choices are essentially taken away, the grief of wondering what could have been is palpable. It’s so hurtful when people tell me to foster or adopt. It’s like they completely ignore the fact that I am single!!! I can barely take care of myself and my cat, let alone be there for a child alone. Show some sensitivity! Hear me instead of trying to make me feel better.

I rage over physically looking like a completely different woman with these chemo curls. They aren’t natural to me.

  • I truly struggle over “this hair.” Sure, I know it looks cute like a baby giraffe, but it is NOT my natural hair!!! I didn’t grow up with naturally curly hair. Chemo did this, not nature. I didn’t ask for this. The PTSD I feel every single time I look in the mirror tightens my chest and causes tears. My thick eyebrows pre-cancer now must be filled in with a brow pencil. I don’t care that no one else sees the flaws and damage. I am the one who must live with them.

I rage that the treatments, surgeries and pressure to work full-time have visibly aged my face and body by at least five years.

  • It took over two years for the dark circles to fade. I’m in a constant state of fatigue. It shows in my face. My former baby face has been through an unwelcomed war. I see the wear and tear it has caused.

I rage that I no longer know why I’m fighting so hard to stay in this world with no physical legacy.

  • I feel survivors’ guilt so deeply after hearing someone is diagnosed as stage IV and have a husband and children. So, what about those single, childless people? What do we have to live for if not family? Why should we keep fighting to exist in pain when there will never be children or grandchildren? Who do we share our memories with? What is our purpose?

Finally, I rage that after all these years on earth, I’ve become what I always feared – alone and ordinary.

  • How do I stop having survivors’ envy? I see so many survivors running marathons, jumping out of planes, traveling and other really physical activities when I can barely walk the two-mile trail in the park. Why didn’t my body heal and become stronger? If anything, I feel I get physically weaker each day. How is that surviving and thriving?

Though I often feel alone with my rage, I know there must be others who suffer through this in silence. I wish I had the right coping skills to help all of us get through the daily insanity. That’s the hardest part. I want to take action but don’t know how. My current therapist says I’m doing the right things to cope, but I often don’t feel like I’m doing enough. Is this it?

I rage because at the end of the day, I just want to matter and be remembered and LIVE instead of just existing.

Until next time,

Warrior Megsie