The Bittersweetness of Having a Family
Being married and being a mother, alongside having a chronic neurodegenerative illness is hard.
I am eternally grateful for my family and for being surrounded by a little army of cheerleaders. They love me unconditionally and motivate me to be the best version of myself every day. But it is this exact fact that proves to be so bittersweet.
Having people rely on you and depend on you is particularly challenging on the days when Parkinson’s hold is especially tight. The bitter irony is that this disease is so relentless in its attack on my ability and identity, that I constantly struggle for some semblance of survival. On a daily basis, this can prove to be extremely exhausting and exasperating.
The struggle of motherhood
Sadly, being stronger than I feel, or stronger than I can bear to feel, is a lost battle. I only trick myself. I hurt myself and ultimately deplete my own self-worth and my remaining resources.
Maybe this is the mission of motherhood. Period. Perhaps all mothers throughout the ages have felt this challenge and burden. It is not Parkinson's specific.
Personally, grappling with the unpredictability and the mish-mash of non-motor Parkinson's symptoms makes the job of being a competent and loving wife and mother more than I can manage sometimes. Nonetheless, I do concede that my personal experience may be a tad naïve.
As a disclaimer, these days are rare and infrequent, on the whole. But, when they do come, they strike with such seismic force, that the aftershocks, I believe, will be felt for eons afterward. Or, that is what my melodramatic mind sinisterly whispers to me when it is trying to process things.
A desire to retreat
Sometimes, I wish I was alone. I tell myself it would be easier for me. Kinder to them. Better for everyone. I abhor having an audience for my suffering. Witnesses to my struggle. On my tougher days, when Parkinson's forcibly slows me down, tires me out, and makes me cantankerous, I often wish there was a cave I could retreat to.
These days, Parkinson's has left me utterly burnout and useless. I begrudgingly accept that I am not as strong as they need me to be or as strong as I often dupe myself into thinking I am.
My dopamine receptors feel obliterated from the relentless artificial Levodopa-induced flagellation. They are on strike. Enough is enough. They have been pushed and abused for long enough. They refuse to serve me or those around me any further. I am left bereft and empty.
Trying to stay strong
I want to be strong for my family. A stoic Superwoman. Immovable. An impenetrable fortress, a barrier through which no pain or hurt can pass and touch them. But this idealistic notion is immensely flawed.
How can I shield them from such a thing when I am visibly struggling and hurting on a visceral level? Much to my chagrin and shame ... my pain is their pain.
They hurt when I quietly sob and weep. I try to stifle the tears because I fear that they are watching. But by then it is too late. My eyes are like a faulty faucet - they just will not stop leaking.
Trying to be strong for too long inevitably has taken its toll on me. Thus, I put my white flag up and I crumble. Forced to hibernate and recalibrate.
Feeling vulnerable is normal
However, this is okay. This is what it means to be human. Being vulnerable is nothing to feel guilty or ashamed about. In the earlier days of my diagnosis, I cursed, berated, and chastised myself on my bad days. The vicious cycle was exacerbated.
I would feel bad for feeling bad ... which would make me feel sad ... which would make me mad for feeling bad. Thus, this comedic (unintentionally poetic) cycle of self-loathing continued.
Being kinder to myself
Until one day, I had a mini-realization, a quasi-epiphany, of sorts. How was kicking myself on my tougher times helpful to me? Well, it wasn't.
Did it help my situation? It did not. Not one bit. It just made a bad situation worse. Had I chosen this disease? No, I had not. Could I change the fact that I had it? No. I could not.
So, what could I change? Well, I could change the way I felt toward myself. The way I talked to myself. I could be more gentle and loving towards myself. I could choose to be kinder to myself.
So, that is exactly what I do now. I will admit, it does not come naturally to me. It is a habit and a conscious choice that needs to be practiced consistently and strengthened, almost like a muscle.
But, it is possible. I hope rather than seeing their mother as weak, frail, and needy, my children will see my strength, courage, and resilience. I hope they become empowered by our collective family experience, rather than embittered by it.
Getting through the bad times
When the bad moments surreptitiously creep up on me now, I choose to quietly console myself. Whisper my favorite words of wisdom ... like “this too shall pass, this too shall pass” and “be strong, this won’t last long, be strong, this can’t last long".
I know in my heart, that light always follows darkness. The true test of character and resolve is not to be engulfed by the darkness. My logical and cogent self lovingly reminds me that what I am experiencing is transitory and fleeting. That this pain is impermanent.
Yet the truth of the matter is having a chronic disease does hurt. Being disabled is challenging. But that is okay because I know I am a phoenix and I will rise from these ashes. Again and again. After all, this is my naturally endowed superpower. Always has been.
But, hey...promise you will not tell anyone though...especially not the pesky Parkinator.
Do you find music to be an important factor in your life with PD?