Happy Birthday and I Miss You

Dad and Mark, August 2007

Today is my brother, Mark's birthday. It's also my dad's birthday. Dad would be 84. I won't say how old Mark is.

I know I've blogged and facebooked about this before, but allow me to repeat myself; I'm old now, and sometimes The Past is my favorite place to hang out...

I like remembering the day Mark was born. I remember a friend, Genevieve Kennedy, coming to our house very early in the morning to take care of Bev, Karen and me, because Dad had to take Mom to the hospital. Then there must have been a big long commercial or something, because the next thing I remember, it's much later and Dad is sitting on the floor with us girls, leaning back against the couch, telling us about our baby brother. I can still hear him say, "Yep, that's the best present she ever gave me."

May I digress here, and tell you one other memory I have of when Mark was a baby? Well, he was crying in his crib, and Mom was changing him or comforting him or something, and I was watching her. That baby boy's skin was deep, deep red from all the screaming, and I innocently asked "Do you think he's a Negro?" I really didn't understand why she laughed, or why she told the story over and over again, every chance she got. I honestly thought some people just were, and it didn't have anything to do with ancestry. And I kind of think things would be better if that were the case.

Well, the last time I saw my dad was the day after his birthday in 2007. He died January 4, 2008, and this is the 6th time we've celebrated his birthday without him. We all still miss him like crazy.

But Mark -- Dad's best gift -- is still here to celebrate. Since Dad's been gone, we just don't get together to celebrate often enough. I saw him for breakfast yesterday, and just like every time I see him, I felt happy, content, blessed...I love both of my brothers and my sisters in a way that only siblings can love. But today I'm thinking about Mark.

Happy Birthday, Mark! Here's to you. And to Dad.

Aimee

This is Aimee, with her son, Mark, and his son, Joshua, in 2011.



This is for my friend Aimee. I only know Aimee through facebook. She is the mother of my son's friend, Mark.

One year ago today, Mark's life ended.

I went to Mark's funeral, but was unable to bring myself to speak to his mother that day. Her pain surrounded her like a veil -- as did her friends and her family -- and I didn't want to intrude.

Dominic hadn't seen Mark for a couple of years, but several days before he died, he stopped by. I wish I had given him a hug. Mark was my friend on facebook. His timeline is still available, and on it, I can read the most beautiful prayers and reflections that Aimee has written. Through reading those words -- words that come straight from a mother's heart -- I feel that I know her.

I know I am going to meet her soon. I will give her the biggest hug, and I may cry.

Aimee is so much more than her pain, though. As hard as it is to imagine that one can ever find a way to smile or feel joy after losing her child so tragically, Aimee is a joyful person. She has a wonderful, bizarre sense of humor, which, I can now see, her son inherited from her.

I can see from photographs what a beautiful woman Aimee is, but without ever seeing a picture, I would see her beauty in the things she writes and shares.

I am thinking of Mark today, of course, but mostly I am thinking of my friend.

What Do I Know?

Warning: This is going to make me sound like a mouthy know-it-all who has no respect for doctors or medicine. I'm sorry for that, because I'm not, really. At one time in my life -- 26 years ago, when my son was born and whisked away to a neonatal intensive care unit in another hospital -- I trusted doctors and nurses and technicians and machines and medicine as if they were God. I never questioned a thing. I wish I could have that kind of trust again. But having this condition myself has made me feel helpless in a way that I haven't since my baby was so sick. Plus, some things have happened -- you know, those annoying little mistakes we all make at work -- that have made me apprehensive about trusting my life to another human being, no matter how many medical degrees that person may have. Of course I trust God. I'm quite sure he's the one who's telling me to read and ask questions about everything. I intend no disrespect for the medical profession. This is just the way I am now.

Sarcoidosis: Let's break it down. Sarc = flesh, oid = like, and osis = diseased. So, if I understand Wikipedia's definition correctly, sarcoidosis is an ugly-sounding word for an ugly condition involving flesh-like, diseased growths called granulomas. (I think granulomas is a cute word, because it reminds me of granules, which reminds me of sugar.) These fleshy globs of death and decay (I'm paraphrasing now) most often appear in lungs and lymph nodes, but they can show up anywhere. I have them in my lungs, but I don't know how they got there, or how long they've been there.

Wikipedia says they sometimes clear up or go away "spontaneously." My experience has been that any doctor worth his diploma will want to prescribe prednisone, and he'll want to start with a pretty hefty dose, just to see if it works.

Prednisone: A drug -- a steroid -- used to treat a long list of conditions, including breathing problems. It reduces your immune system's response to various diseases. My mom took prednisone back in the 70's, when she was diagnosed with Hodgkins Disease. I remember hearing her rant to someone over the phone about how horrible that drug was -- Oy vey, all that damage to all your organs! (Okay, so Mom didn't actually talk like that, but I think we know where I got my ranting predisposition.) That was enough for me. At that moment, I made a conscious decision that I would live out the rest of my days in mortal fear of prednisone. (Did I mention that prednisone sometimes makes patients -- and their children -- think a little irrationally?)

Of course the list of side effects and precautions listed on the patient prescription information they give you with your pills is far too lengthy to quote here. But I bet if you can think of something that can go wrong, prednisone can make it happen. (So can getting older, but I'm glad I have prednisone to blame.) By far, my favorite sentence is the one that says, "Remember that your doctor has prescribed this medication because he has judged that the benefit to you is greater than the risk of side effects." Really? He gets to make that decision without any input from me?

The other one I love is "Some conditions may become worse when this drug is suddenly stopped." To me, that's the same as saying "You'll never get off this stuff." And yet the doctor is the one who gets to make the decision.

Pulmonary Fibrosis: The formation or development of excess fibrous connective tissue in the lungs, also described as "scarring of the lung." (Wikipedia again.) It can be a secondary effect of other diseases, like, say, sarcoidosis. But it can also appear without any known cause. That makes it idiopathic fibrosis. (Idiopathic is a word I don't like, because it makes it sound like you did something idiotic.) Seriously, though -- you can have scar tissue in your lungs without having a clue as to how it got there. You can't say that about scarring anywhere else on your body.

In my case, the scar tissue looks like it's been there longer than the sarcoidosis. They just can't tell for sure, but they're pretty sure a good shot of prednisone is worth a try. Wikipedia does say that there is no evidence that medications can significantly help this condition, but what the hell -- what's can a little prednisone gonna hurt? (Oh, yeah -- see above.)

I've known about all this stuff for about five years now. As I may have mentioned, I'm on prednisone. I also use oxygen when I sleep, and whenever I'm active. One way I have of knowing how I'm doing is having annual Pulmonary Function Tests. When we first started, my lung function was at 75 percent. In three years it dropped to 68 percent, a year later to 65 percent...That was last year. My most recent test showed that it's dropped to 45 percent. That's significant. I'm going to have to study harder for the next one, I guess.

I've had something of a love-hate relationship with my Dr. Pulmonologist since I first met him five years ago. Mostly I love him, and when I see him, it's always hard for me to remember how outraged I get when I'm unable to talk to him on the phone, or am punched in the face (because that's what it feels like) by office policies regarding who is allowed to inform patients of test results. Recently, overwhelmed by frustration, I unloaded on the innocent nurse at the other end of the phone line, knowing full well that when I was finished, I would fall all over myself apologizing.

The pictures decorating this post are Dr. Pulmonologist in his various incarnations as I've blogged about my issues in the past. I don't know if he's a really good doctor, but he's a really good person. I trust him as much as I can, and pray -- a lot. And thinking about that, this "condition" really could be the answer to a prayer, because if one of my kids had it, I know I'd be praying like crazy for God to take it away from them and give it to me!

Motherly Advice

Mom holding me...1952



My mom gave lots of advice -- most of it good, as I'm now able to admit. I didn't always feel that way, though. In fact, for most of my adult life, I arrogantly resented her unsolicited words of wisdom. (How wrong I was.)

Ah, Mom...

Today would be her 83rd birthday, but we won't be celebrating with her. She died 12 years ago. Contrary to what I've read in self-help bereavement books, I shouldn't be able to remember the sound of her voice, but I do. I can also remember many of her words...

"Hold your head up high, and act like you have every right to be there." She would say this whenever one of us felt shy about having to step outside of our comfort zone -- i.e., home.

"Don't worry what other people might think of you. Just be yourself." Again, when we were feeling intimidated about having to speak up for ourselves.

"Make your bed and do the breakfast dishes first thing. Then, if someone asks you to go someplace, you can go with a clear conscience." (Of course, it went without saying that you should also apply fresh lipstick and make sure you had on clean underwear.)

Most of all, I remember the last words of advice Mom gave me. They stung, because I knew she was right. They came after she'd "almost" died in the hospital.

My sisters and brothers and I all agreed that Mom must have gone someplace the rest of us had never been that day, because she came back to us a changed person. Where there had been sort of an invisible armor around her, making her seem untouchable, she was now open and childlike. She looked at us in a new way, too. Not as though life with six kids had beaten her down, but as if she were really seeing us and appreciating each one of us for who we were. We were all happy to have the opportunity to get to know this new, softer version of our mom.

Giddy with relief at still having her with us, we were all there in her not-so-intensive-care room, trying to outdo each other in our efforts to make Mom laugh. And we were all winning. Then I missed something that Mom had said...

"What?" I asked.

She looked at me -- really looked at me -- and said, not unkindly,

"You should listen the first time."

At that moment, I could feel how exasperating it must have been for her, all those years of me rushing ahead, my mouth immediately following my mind, never being fully in whatever the moment was. I felt ashamed and sorry. But I know that she forgave me. And I have tried -- really, really tried, sometimes -- to follow the advice that my mom gave me just a few days before she died.

And even when I fail, I'm glad that I can still remember when she told me.