I haven’t been able to write for a while. I’ve had a lot that I’ve wanted to say…but it was stuck, lodged somewhere between my head and my heart and my craw – a serious case of emotional constipation. And I think I know why.
When I was first diagnosed, I was desperate to find anyone who might know what I was going through. Unfortunately, all I found was the blog of an individual with a similar illness that honestly did the opposite of inspire. This writer was scared and depressed and didn’t have many positive things to say about the physical toll of lung disease and consequential lung transplant. It was then and there that I 1) decided to start a blog of my own and 2) made a promise to myself that I would be real about this journey and, more importantly, that I would give people the hope to indeed be happy in spite of lung disease or any of the millions of other ailments and trials we all face. This, to me, would be a giant middle finger to this whole “getting sick” thing. I metaphorically pounded my fist onto my desk and in my best Rhett Butler voice declared, “I’ll be damned if this lung disease defines my happiness!”
But truth is, it has. As of lately, at least.
I could paint you a picture of the rollercoaster that these past few months have been. I could tell you about the clinic and hospital visits and the good news and the bad news we’ve received. I could tell you about the medications I’m on and their difficult side effects. I could tell you how my diet is really restrictive and how in spite of my best efforts at the gym, my results are painstakingly slow and discouraging. I could tell you about learning I can’t carry children and probably never will. I could tell you how limited I often feel and how sometimes I want nothing more than to be normal and to have a normal life.
I find myself constantly looking for an escape. Escape from my body. Escape from my situation. I look at homes and vacations and clothes and puppies and things I think will make me feel better about myself. I find myself on edge and I often take out my hurt and my pain on my husband, the one person who knows better the exact brand of struggle we are going through. Truth is, I’m not happy with myself. I’m at odds with what is. And I’m always saddest when I’m at odds with what is. And I’m ashamed to admit that over these past two months, I’ve had moments where I felt angry at God, for the first time in my life. In a time when I should feel hopeful and optimistic, I’ve questioned what it’s all for.
So…back to my original goal, to not let lung disease define my happiness? Oops…Rhett Butler, gone so soon?!
I haven’t written because I didn’t want to have to sit down and tell you this. I didn’t want to tell you I had failed. Worst of all, I didn’t want you all to feel like you would fail, too.
When I was diagnosed with my illness, I had an idea of what to expect physically. What I wasn’t prepared for was how having an illness affects you mentally and emotionally. It’s crucial to pair any physical regimen you may have with a spiritual, mental and emotional regime. I’ve had to learn that my hope of healing depends on taking care of all these equal parts of who I am. They won’t always be in perfect balance, but that’s ok. I just have take a personal inventory and make some adjustments (that’s what I’m trying to do, anyway).
Every journey, every illness, every trial is so one-of-a-kind, with unique challenges and ups and downs. The realization I’ve come to is this: I need to stop holding on to the old Mackenzie and embrace the new Mackenzie. The one who has fuller cheeks (and a hump…yes…a hump) because of the Prednisone. The Mackenzie who walks a little slower and sleeps with an alien death star mask to help her breathe at night. The Mackenzie who eats salad instead of pizza because her life depends on it. The Mackenzie who plans trips around her oxygen usage. The Mackenzie who seeks to fill her husband’s needs beyond her own. The Mackenzie who can’t go hiking, but can manage a level river trail just fine. The Mackenzie who’s coming to know the value of life and how quickly it can all change, who will find her place and calling in this world – not in spite of all she feels she may lack, but because of it.