This week we celebrated Martin Luther King, Jr.’s birthday. One of my favorite quotes happened to be made by him:
I think about this quote often. In dealing with the fallout of this diagnosis, I am afraid more of the possibility that I will lose my chance to effect change in this world, than I am with the possibility that I could die. I am not afraid of death, per se, but more of the method. I do not like the finality of it, or the fact that I will leave my family behind (especially if it causes them pain), but that is the extent of it. Pretty dry, I know, but we all live and we all die. What I am terrified of, have nightmares about, and pray everyday a resolution for, is that I still can leave “my mark” on this world before that time comes. It is the caliber of “stuff” that makes me cry without abandon. I want a life that I, and my children, can look back on and say that I was useful; that my life counted; that I made a difference, and that I left this world a better place than I arrived. These are all phrases for living a life of purpose. This is of utmost importance to me and even more so now that I am facing a life-threatening illness. I want to scream to the “Gods” that be, “I AM NOT FINISHED HERE YET!”
I attended a private art college late in life (40’s) and graduated with big dreams that I could use that education to bring awareness to the struggles of those with cognitive and physical disabilities. Straight-out-the gate I presented my designs to large corporations on bringing inclusion for those with autism into mainstream public places. I was on a mission; excited about the change I hoped to create with sensory-sensitive environments. But more importantly, that I was bringing awareness to an industry that didn’t typically consider this type of end-user. It was a break-through moment for exclusion and discrimination. But then something outside of my control, put a halt to all the progress we were making. “Later,” they told me. A year later, it was still “later”- and it continues to be now. Another screaming moment of, “I MAY NOT HAVE A “LATER!” But, of course, I cannot tell them that, and it wouldn’t matter anyway. The loss of momentum was a slow and painful “death” of my aspirations to make real change for the autistic community: a community in which we belong, as we have an autistic child. The realization that I will not be able to see this design to fruition is painful. Actually, I am still grieving from that loss.
I continue to speak out the best I can for the autism community – much of the time I feel as though I am banging my head against the wall. Discrimination in public spaces, schools and potential jobs, is rampant. My passion for this community runs deep; my conviction to help them pull out of the pit of injustice and invisibility still rages. However, my timing is off. The world isn’t ready yet. I always seem to be ahead of that curve. So, the white elephant in the room is, “Will I be here, and functioning, when the world IS ready?” It is a question I wake with each day, and wrestle to quiet each night, so sleep can come. I will be very sad to leave my children behind in a world that has not embraced this community.
But with illness, there are many stages to loss and grief, as this chart illustrates:
I really don’t remember hitting the stage of “Shock” first. I think I went straight to denial. I didn’t believe the doctors at the hospital when I was first diagnosed, because I felt good and healthy. It was a mistake, I figured, and would get straightened out once I visited a cardiologist. So, I went to a cardiologist who ordered a catheterization. After my catheterization, that cardiologist told me, almost apologetically, I had a “very weak” heart. My oldest daughter was with me, and I felt like the guy smacked me. That was when shock hit. It was fleeting though, as a smack usually is, and then my intellectual self went straight to “Testing” – asking the cardiologist a barrage of questions within minutes of diagnosing me with, what could be, a death sentence. I have lived within the “Testing” stage ever since. I am constantly looking for solutions and the doctor’s just love it when I show up with a handful of printed internet articles to discuss. This is how I cope. Coping is the skill required to navigate such a diagnosis, alongside hope. Without hope that you will come out the other side, you may as well dig that grave yourself and prepare to lie down in it.
I did float around with other stages on this list. In fact, I seem to come back around to “Anger” a lot. Maybe more than I am willing to admit here. It lights the fire in me to keep fighting; makes me question the doctors more; makes me kick down doors that would remain closed without persistence. We all need “Anger.” It serves a purpose, and I won’t apologize for it. What I will apologize for, and to my family, is the “Depression” stage I experienced. I won’t mince words here – I always thought those who lived with depression were “soft” and didn’t want to feel well. Because I felt that it was a “choice” we all made to wake each day and embrace it. Yeah, sure…what an idiot I was! Or at the very least, I was uninformed.
A couple years ago, I experienced about a year with depression. I was later to find out that it was a psychological side effect of a beta-blocker I was on. It was a horrible year. It is no exaggeration to say that my husband had me on suicide watch and that all the guns in the house were removed for my safety. I have never felt such a deep despair; and I had lived as a single mother under the most disgusting circumstances of betrayal. I would go about through my days, running errands, housecleaning, etc., and images of all the ways I could end my life would appear. You would be amazed at the imaginative ways it could be accomplished. I should have written them all down as maybe I could have laughed at myself later. I was completely irrational. In fact, my favorite “fantasy” was driving to the campus of my college, wearing a sign on my back about debilitating student loans, and shoot myself at the center entrance (as the guilt of having student loans was my main source of depression). This is when I warned you in my first blog post that things could get “dark,” but all the more reason why it needs to be put out there, because this really happens. It happens to people like me who really never had a day of depression up until this incident. And unlike popular belief – hell, my belief until I experienced it – those thoughts were beyond my rational self. It is important to say that I never thought about, or wanted to hurt anyone else in this depression – just me. At the time, I was convinced that I would be doing my husband and children a favor, as some of the student debt would be forgiven upon my death. I felt like I was making a “loving sacrifice” for them in my last ditch effort to be useful. It became my new purpose, no matter how misguided. Obviously, I wasn’t making much sense.
My poor husband: he endured. He helped me with my struggle the best he could and, more importantly, he remained steady. Later, after I was no longer taking the meds and back to my old self, he confessed that he was absolutely mortified throughout. He said it was like watching a person he didn’t know, much less the woman he loved and married. I went from a woman he knew of as self-assured, not too emotional and rarely seeing me cry – to crying all the time and a blithering wreck: oh, and that pesky thinking of ways to kill myself all the time “thing.” Usually I have my shit together more than that. Well, at least I think I do. He was afraid to leave me at home alone or to go to work, much less talk to anyone about it. He dealt with this himself and I am sure it was quite lonely and hard on him. This is only a small reason why he is my hero, and that I love him dearly. I put him through hell that year. I truly apologize that he had to see me decline in that way and I will do all in my power to make sure he doesn’t see me that way again. I no longer take any drugs. I would rather lose this fight with clear eyes and mind, than drag my family down that road again.
Although I still have struggles with coming to terms with my new reality, I don’t struggle with wanting to be here and fight for every day I get. My renewed sense of purpose is to let go of expectations and allow life to just “be.” This has been a difficult concept of self-awareness, as I want to run, and do, and frolic with destiny just like everyone else in life. I sometimes feel like the world is spinning without me in it; friends are in wonderful design projects, having children, grandchildren and traveling the world; and here I sit (figuratively). I am trying to find some peace in the silence and hoping that I can have another shot at my destiny after this storm of illness has passed. For someone strung as high as I am, the wait is unbearable at times. But I still seek joy in the everyday, and beauty in learning to slow down and take notice of the necessities of life: family, spirituality, friends and yes, even purpose. Purpose may look different through the lens of illness, but still imparts the satisfying feeling of moving forward – towards something better than the reality that is today.
I believe I may have reached the “Acceptance” part of grief; at least I hope I have. I accept that my life has changed. I concede that my direction and objectives have been altered – for now. I still long to make the difference I intended for the autistic community and I hope I get the chance to do so. It may take me longer, and I may have new “equipment” when doing so, but my determination has never waivered and my “heart is still in it.” That passion can never be excised. Maybe I am just waiting for the world to catch up with me.