I’m not my diagnoses of bipolar, anxiety, and PTSD. I’m not the symptoms associated with these diseases. I am, however, greatly affected by these diseases because they change the way I think and they change the way I feel and they change the way I behave. Most destructively, they robe me of the capacity to make good, sound judgments. In most instances, there are serious ramifications when I’m in the midst of these episodic symptoms, that point in the episode where I lose awareness of my symptoms and behavior. The abnormal becomes “normal” for my brain.
By and large, I cruise through life much as I’ve always cruised through life, and for who you happen to ask, I’m either a gregarious, fun dude, or I’m just a garden variety asshole. Whichever, I’m not affected detrimentally with symptoms. And this is why I say I’m not my symptoms and I’m not my diagnoses. Because only rarely do I crash into a serious mental health crisis, like that of the last two months (I’m feeling much much much much much better now, although I am still somewhat confused about what’s “real” and “unreal” about the last two months).
This is not precisely what I wanted to chat about, though, even though it dovetails in cleanly.
In 2001, September 11 to be exact, my Mom was preparing to go in for a mastectomy due to her having stage 3 breast cancer. I was to fly out that day, and for obvious reasons I had to make the drive from Albuquerque to California so I could be there for her surgery. What was already an emotionally trying day was compounded by national tragedy.
Mom’s surgery was scheduled for the Friday following her diagnosis (on September 14), so there was little to no time to prepare ourselves as a family for Mom’s distress and then the distress we would all feel in helping nurse her back to health. It came on fast, much too fast.
Mom made it through surgery just fine, and Dad, my Sis, and I got a crash course in chemotherapy. There were support groups for my mom (cancer survivors), our family (particularly spouses), and how to best support Mom while also being useful for her oncologist. This all happened in the space of two weeks.
What we weren’t prepared for in any way was Mom “not being like Mom.” Chemotherapy is essentially pumping your body full of poison that happens to kill rapidly growing cells like cancer cells. It is also when many chemo patients lose their hair. Mom’s attitude changed. None of us could clean the house properly, so we brought in a maid, who also couldn’t clean the house properly. She had to sleep downstairs on the overstuffed couches because she was too weak to climb the stairs. She was angry at times, crying at times, almost fully lacking affect at other times. Her mind was being affected as badly as her body.
For six months, this was how Mom was to me and to our family. She lived for our family, seeing as she grew up an orphan. And during these six months, it was like we could have been any annoying stranger who walked in the house to dirty it up. Did I mention Mom was a bit OCD? She was.
My sis and I got in a huge fight over something that I still don’t understand, and for ten years we were estranged. We are on good speaking terms again, but we don’t spend a lot of time together. I never knew my Dad could cry because he’s of that generation where men stuffing emotions as deep as possible is what it means to be a man. And me… I just did everything I could not to have a bipolar episode, for which I’m proud to say I didn’t. Mom wouldn’t be able to take it, so I tried even harder to be even more responsible about my treatment.
Thankfully, six months passed and we got Mom back, the same Mom who could make friends wherever she went, the type of person who is a natural “people magnet”. I think I learned a lot of my annoying traits from poorly emulating Mom’s charming nature.
Mom had a new zest for life, riding roller coasters, riding mules into the Grand Canyon, camping with me and my kid rather than staying in hotels while on vacation. And she had this new zest for life as a confection topping of her already beautiful personality, up until December, 2010, when she said, “Steve, I’m bruising really easily. Should I see a doctor?”
When Mom and Dad got back to California after the holidays, it took another two months to diagnose her with a very rare blood disorder called MDS. Essentially, her bone marrow produced immature red blood cells so she never could get enough oxygen. She lived another four months, not in any pain; she lived dependent on blood transfusions so she could breath.
The thing about it is Mom learned how to live her life to the fullest, and she was very responsible about her quarterly visits to the oncologist every year, and she was very responsible about taking her prescribed medications. And still, MDS got a hold of her (it might as well be called cancer, because it’s very similar to leukemia).
And this time, our family was ready for the pain, heartache, and the prepared knowledge of what Mom was going to need from us. Mostly, it was our love and our being there for her. She lived as much longer as she did because she had loved ones who cared, even though we knew how hard it was going to be on us. But we were prepared emotionally, and we were prepared academically (knowledge is power!)
Mom died peacefully, with my sister holding one of her hands and I holding the other. And we all were there for her in the end. And that was special. And that resonates with me.
You see, with bipolar and its related psychosis, if you met me at just that time where I was in mental health crisis, you would have thought me nuts, crazy, bonkers, and not worth the time. Or even if you met me before my most recent delusion paranoia psychosis, you would have your doubts as to my sanity and ability to remain stable.
Get this. I’m INCREDIBLY responsible about my mental health treatment, just like Mom was about being in remission for 10 years. In fact, I learned the importance of constant self-care from her. Still, in the end, MDS got Mom, and during the last two months, I got hit with a psychotic crisis after five years of responsible self-care and professional care.
What Mom said in her final words for me was, “Thank you for always being there and never leaving me.” I’m weeping right now writing this.
Can you imagine what would have happened if instead our family said, “Oh, no. We went through hell last time you had chemo, we’re not going to stick around this time.” Would Mom have died in peace, would she have lasted another four months? Her oncologist told me MDS patients typically die within a month of diagnosis.
So consider my predicament currently. I have people telling the woman I love that I’ll have another major episode and that it’ll drag her down again, and so she should cut me out of her life. As I heard it, “Get your key and move on.” I can’t help but think about my Mom, and in order to prepare for the “just maybe” chance of her coming down with cancer again, we as a family steeled ourselves so we knew just how to support her. It was 10 years we had Mom, and a huge reason is because she had her loved ones there who did not step away because she had cancer the first time. She died at 71. She could have continued on living and never gotten cancer again.
There is an important lesson for me in here. Because I prepared myself, because I support Mom, because I always let her know she was never alone, I had her in my life for another decade, even during those six hellish months where I didn’t even recognize the person who raised me and loved me.
It was an incredible 10 years with so many incredible memories I would have lost out on if I turned away during those six months of chemo.
And this is why I can’t help but feel some bitterness about the way ones I love have stepped away from me. It’s like saying, “Don’t be with that guy because even though his cancer is in remission you remember how hard it was on you last time.”
I found support groups. I read everything I could. I stayed by my mom’s side and had supports in place to keep myself from falling prey to my own diseases.
As the analogy goes, my bipolar has been in remission for five years. And I’m still healing, and I know I will heal. And maybe it will be another five years, or ten years, or twenty years, or never again. And it saddens me that people’s lack of understanding is leaving me feeling abandoned and alone.
I love my Mom. She was the best Mom ever. She taught me the value of love and family, and staying with those you love through good and bad, and how to prepare myself to hold her hand while also reach out with my other hand to support me. And her values are my values.
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