In the 60’s I was the typical high school teen, scared to death of the brim n firestone preached to me by the nuns and priests in school and the wicked third eye my mother most surely possessed. That was the fear instilled upon me that kept my clothes on in the back seat of a car at a drive in movie. That’s the fear that kept me a virgin till one year after I had graduated from high school. My mother, that woman seemed to be everywhere. She knew all, she saw all, and I was doomed.

In the 70’s I married, had my first child, Lela. Having married the man I lost my virginity to and  divorced a mere three years later, it was then I started becoming aware of the ‘me’ inside...slowly, cautiously I expanded my horizons, started taking dares and living life in a way that would change my life forever.

Remarried in 1978 and giving  birth to three more children in the 80s, Julie, Dennis and Jackie. We bought a house. We became established members of society. We played the ‘keeping up with the Jonses’ cat n mouse game.’ We were house poor and up to our knees in debt. I threw myself into my church and community and kids. I taught religious ed. We were the epitome of middle class America.

Lela, being my oldest and from a previous marriage, 15 years older than her youngest sibling, Jackie. I fondly remember, as clear as the day it happened, Jackie and I playing on my bed. I, lying there, tickling, cuddling her, as she jumped circles around me on the bed. In one moment, she exclaimed “ Mommy, where’s your friend today?” I asked, “ which friend honey?”. “Your friend, Lela, mommy. She’s nice. Can she come over and play with me?” Stunned, it suddenly occurred to me, as I chuckled and touched Jackie’s hand, “sweetie, Lela’s my daughter. Lela’s your sister, honey.” Jackie, her eyes huge as melon balls gasped “she ISSSS?”. Lela didn't live with us then. At the age of 23, Lela was married with a family of her own. It never occurred to me Jackie thought of Lela as our friend and not her blood relative. How odd.

The 90s were a time of upheaval, extreme  challenges, illness and more change. Drastic changes, growth and inner strength and learning. More and more learning. As I’ve always said, life’s greatest gifts are the lessons we learn, and if ya ain’t learning, then you’re dead. If not in the physical sense, then dead inside.

The new millennium. The age of Aquarius has arisen. Enlightenment. Enhancement and Karma. Thru these years I’ve aged, sagged, struggled, cried, fought, divorced, again, loved,  but never gave up. Diagnosed in 1998 with Alpha1 Antitrypsin Deficiency I thought I was given a life sentence. Not so.

Today, 5 years later, Alpha1 isn't a big thing in my house. It’s the way it is. It’s a way of life.

My family is very normal, as normal goes. We don't tip toe on eggshells. If I’m having a bad breathing day, I say so. My kids will be there in one sense or another to help me. If they sense I don't feel threatened they’re just fine. That doesn't mean I hide my struggles, I can’t. When my kids see I’m handling things, then they’re ok. We’re a typical family dealing with a not so typical illness. But we’re ok. Know what’s cool? My kids think I’m ok.

My son told me once, ‘ mom, when I grow up I wanna be just like you’. He was 19 at the time.

Years ago I felt something was missing. I didn't know what I wanted to do with my life. I didn't know what my purpose in life was. Through my quest to find answers I suddenly realized <call it a rebirth if you will> I’ve learned if your happiness is based on people’s approving of everything you do and getting bravos for it, you’re doomed to failure. It cant ever be enough. The goal, my purpose isnt about myself. One thing I’ve realized, and to me it rings so true, the idea of ‘reactive behaviors’. Everything we do is reactive to something else. Why we get upset, get angry, cry, why we show jealousy, why we show hurt. There’s an easier way to explain this... “ don’t sweat the small stuff’.  We shouldn't allow what others think, feel, do, to effect us. A beautiful friend put it so candidly, “what you think of me is none of my business.” That’s it!!

You don't have to like me, you don't have to agree with me, you don’t have to do anything at all, just respect me and my opinion and choice to do so, to say so. Simple as that. I think since I’ve adopted that sense of thinking I’ve become a better person inside. I’ve let go of the radical outside forces that were eating me alive. I like myself now, this easy going laid back person I’ve become.

I visited with an old time dear friend of mine this evening. Her hubby, Roger, shared something awesome with me. He explained to me “Sandie, I can tell you this and know you’ll understand. No one else does or ever could. You and I share the same ‘place’, so what I’m about to explain to you about how I’ve changed, since diagnosed with my chronic illness, I’m sure only you could understand in a way no one ever could. Not until they’re where ‘we are now’”. Rog then went on to tell me how he really feels these days. “ I don’t care anymore, Sandie. Nothing matters. Nothing.” I knew exactly what he meant. Exactly. As Terry would put it, I understood ‘ total T’. What Rog was saying to me was once you’re forced to face your mortality you look at things, life, people, issues, situations in a whole different light.

Chronically ill people ‘transcend’ to another level. We rise above the bullshit. Issues such as who’s on first and what where and when, who did it, why did they do it and who really gives a damn if they did it or not nor the reasons surrounding it. Rog went on to explain “ I live life at a slower pace now, appreciating more, taking less for granted, wanting less, needing less.” As he sat there pouring his heart out to me I began to cry. I was overwhelmed and full of amazement at this man who sat there telling my story. I too felt the same way. I just don’t care, I don’t give a damn. It didn't matter anymore. I don’t sweat the small stuff, appreciate more, take less for granted. I, <we>, don’t have time for the petty crap people create..making mountains out of molehills. I have bigger, steeper mountains to climb. I just take my time getting up there these days. I may not get there as fast as you, but I’ll get there nonetheless. And I’ll see more, touch more, feel more, appreciate more on the way up..and unlike my healthier friends and family, remember more by the time I get there.

So, I understood exactly where Rog was coming from. I’ve let go. I’ve let go of the bullshit and the pettiness. I’m not afraid to die. I’m not afraid of anything. I shared this information with Sharon. I expressed to her how awesome it was to hear someone else mimic my words, my thoughts, my feelings. Sharon shared with me, no, she didn't understand where Roger and I were coming from. She couldn't possibly. Nor can Terry. Nor can my kids. No one can. No one other than someone else who’s walking the same path I am. The same path Roger is. It’s only once facing your own mortality do you really slow down, forced by the physical limitations. Having done so, the brain kicks into gear, forcing you to face the reality of the situation. And the reality of the situation is just this.

When I’m dead and gone it won’t matter that I busted my ass keeping my house spit shine clean day in and day out. It won’t matter how much money I earned this month. It won’t matter I was 15 minutes late to the board meeting. And, it won’t matter my garden overgrew with weeds.

What WILL matter is how many will remember me when I’m gone. And more importantly, how WILL they remember me? Did I take that extra 2 minutes to hug the one I cherished so much in life, instead of jumping down their throat for doing somethin wrong..? Did I take the effort to compliment or praise my child for a job well done? Did I take the time to remember to say a kind word to someone special and important in my life? Sometimes we give outsiders more praise and kindness than we do the one’s closest to us.

Patience, compassion, kindness.

Too bad it takes chronic illness to sharply jolt us into the realization what the secrets are. Life’s secrets, life’s answers. I’m getting closer to that realization. I asked Sharon, ‘can you see the light burning within you?” She remarked “  I can feel it” . I asked her again “ but, can you SEE it?” She looked at me, confusion on her face. “ No, I don’t understand, what are you seeing?” “ The light, Sharon, the light that burns from within. The light of hope. The light that motivates us. The burning light that we feel. You can see it with your third eye..it’s the promise that everything’s gonna be ok. Nothing matters, Sharon, because it’s going to be ok. You’ll be ok, Rog will be ok, our kids will be ok, Terry will be ok..nothing matters, you see.

It’s out of our hands.

We’re gonna be ok, one way or the other.