And so we BEGIN...

I’ve written and rewritten the first blog post for this site a thousand times in my head. First, this was going to be a collection of postings about my personal journey as I bore all the “ins” and “outs” of being a hands-on caregiver. Then I thought about writing this simply as a “how to” in a self-help and informational format. Finally, tonight, as I listened to my mother go in and out of struggling to breath in her sleep, I finally settled on allowing it to be what it wants to be from week to week; which is much like what I had to do when I became a caregiver. Allowing things to be, without the need to control, is exactly what I have had to practice every day as I care for someone with a chronic neuromuscular disease.

So, let’s begin at the beginning of my personal caregiving journey. It all began with me watching my grandmother care for her husband, my grandfather. They were married at sixteen and here he was facing the end of his life at sixty. Stricken with spino-cerebellar ataxia, which is a hereditary disease that appears to show up in your mid to late 30’s and into your early 40’s, he was completely dependent on my grandmother for her his needs. Now, even though my grandfather was diagnosed accurately, the prognosis in a small town in Georgia would yield little to aid in his quality of life moving forward. The struggle would lie in watching him succumb to this neuro-muscular disease little by little, bit by bit. It was like watching someone try to reconcile the prison of their body because his mind was fully intact even though his body was no longer willing to cooperate. The disease is akin to tiny slivers of shattered glass splintering off your independence with no hope of ever being put together again.

Time would go on, and as our relatives would die one after another; my cousin reconciled our family was living through a legacy of death. A legacy where life was like a lottery. You may or may not be struck by lightning, but know that there is a distinct possibility it could happen. A legacy of death. Those were her words.

I thought about those words for quite some time. I embraced those words briefly as I tried to wrap my heart around them. Then finally, I rejected them. Rejecting them was the only way to allow a solution to find its way into our hearts despite the despair of so many successive deaths and so many years of hopelessness coupled with resignation. The resignation this disease would run its course and the process is what it is no matter what we do. Death is coming.

However, the light for me was knowing there is a difference between acceptance and resignation. Moreover, we often allow resignation to masquerade as acceptance. Accepting is embracing something as adequate and sufficient with some sort of belief in it. Resignation is the act of giving up a positon. The act of GIVING UP a positon… defeat. Those of us who have chosen to be family caregivers don’t have the luxury of resignation or defeat. We carry with us a strength of heart.

I believe my mother, in all her infinite wisdom, understood this about me. She knew I was girded up with strength of heart, even if I myself didn’t know. I think she knew I would fight. I would fight for her. I think she knew, I had never been one to accept defeat or live in resignation. It was in me to try to give her the best days of her life moving forward. It was in me to live by faith and not by sight. I could remember the line from Ms. Sofia in The Color Purple. “All my life I had to fight…” and I wasn’t about to give up six years ago when my mother needed me to be the eyes, the ears and legs she no longer had to command to her will.

Now, I must admit. In the beginning, at the time, I felt very alone. I wasn’t alone, but I felt alone. I felt no one understood what I was going through and the one woman who would have understood had died under the crush of pure exhaustion. That woman was Christine Brown, my grandmother. Christine cared for her husband until his dying breath. Then she turned around and supported her grandchildren and cared for her own ailing children. Who could ever really imagine the heartbreak she must have felt as she in her 60’s watched her children in their 40’s be overtaken by an ataxia which snuffed out the life of her husband and was seeking to do the same to all her children. From the youngest to the eldest, all four of them had this spino-cerebellar ataxia no one really understood, and I’m sure many nights she asked God why. Why had this horrible dis-ease striken her family in the way it did.

I don’t think she ever got an answer, but what she did decide was that no matter how long or short the road, she would care for her children. Unfortunately, this often was to her own neglect. She didn’t have to be happy about it all the time, but she was committed. A fierce spirit, she cared for them until her dying day. A fierce spirit, she taught me what it meant to be family. She taught me what is like to witness the embodiment of a phenomenal woman. You just do the best you can with what you have and God will not only hear your prayers but He will read the inspiration of your heart. To that end, we can all allow ourselves to live in the light of love no matter how rough the road may seem.

With that, my hope is that you all know you are not alone. May this be a space where we may have different journeys, as we travel along the same road. More importantly, let’s embrace our journey as modern caregivers. Let’s allow ourselves the freedom to walk in the beauty of who we are, while living in service to those we care for day in and day out.