Throughout the course of my life, it was expected of me to not only survive, but also to somehow come out stronger. And that was that. 

But, when I got “sick,” my entire world fell apart: Me, my family, my LIFE.  In the beginning, I found that most of my family, “my people,” had difficulty understanding the complicated reality of rare and chronic illness. That misunderstanding caused a lapse in support, and led me into a deep pit of loneliness, while I struggled to understand it all myself.  Instead of coming together to hold me up and see me through the difficulties that this type of incurable, progressive illness can cause, many of my immediate family members were initially in denial; some of them questioned me; some questioned the validity of my symptoms; some questioned the doctors; and a few were even skeptical of the official diagnosis that I had been given – a diagnosis that had finally come, after years of not knowing what was causing me such agony.  After that, I quickly realized that most people would rather fight to avoid the truth in situations like this, and try to find any other excuse, or a more “controllable” diagnosis – that had a cure. 

The tipping point of isolation came when a family member texted me to inform me that my mom had decided she was not going to be able to talk to me for a while, explaining, “You have to understand. You need to give your mom some time alone to deal with having a [potentially] terminally ill child. It is too much for her. She is simply detaching with love.” As I read that text, I sat there in absolute shock and pure disbelief, thinking, “She cannot be serious!?” But as I would later realize, she was. Days, weeks, months, even holidays, and birthdays passed, and I’ve yet to really hear from her. Through support, therapy and self-reflection, I now understand that such a selfish act is her problem to work through, not mine. I have enough on my plate.

BUT: Being “iced out” by your own mom hurts, let me tell you. It left me with a hole in my heart. I found myself grieving the loss of a mother (who is still alive and well), a mom I was so desperately in need of, WHILE I was still attempting to process what was going on in my body, and fight the effects of this illness.  That was the hardest thing I’ve ever had to do…and believe me, I have faced som HARD times in my life. My family’s future was already going to be filled with so much uncertainty and sickness, fear and loss; did we really need – deserve to go through something else?  Something as painful as losing a mother’s love, support and presence, while dealing with a serious illness? No. And most certainly my children did not deserve to lose their grandmother. 

I was still in the diagnostic process, at that time, and still searching for a treatment plan that would slow the progression and control my debilitating symptoms. The fear of abandonment, and infliction of guilt, temporarily caused me to become too afraid to reach out for help and support, for fear that others would choose to “detach” from me as well. This disconnection came at the peak of my need for the completely opposite reaction from my family and friends.  I was coming to terms with my new normal, and learning new ways to manage things every day.  I was hopeful for the first time in months –but unfortunately, this “icing” affected me by stealing some of that hope, and a lot of my joy. In my heart, I know it’s not normal to detach from a child– ever. However, I realize that that IS the support I am going to get from my mother, and I have to keep moving forward. 

I think chronic illness has a way of initiating a loss of perspective by all parties involved.  It is easy to temporarily lose sight of reality, and shift to becoming consumed with your own grief over someone else’s diagnosis. Everyone is susceptible to becoming engrossed with their own emotional inability to digest such complicated information. When you’re not the person directly afflicted with the disease, or illness, it is easy to lose sight of the difficulties that day-to-day life can bring to the chronically ill.  A lot of people seemed to forget about how much I needed them during that time. I needed help. My little family and I – We needed love and support. I needed “my people” to show up for me.  Some of them did. Some of them didn’t. Sadly, some of them still haven’t. As I move forward in my journey, I will choose to focus only on the ones who have stayed with me, rain or shine – through the good, the bad, and the REALLY bad…Thank you – You know who you are. 😉