Deborah Carney

Where I Celebrate Life

For Chris

There are birthdays and there are the “anniversaries” and I know that even as time passes they don’t get easier… even if we want them to. So on “those days” (for me today is one for Chris) I try to do something that reminds the world about how special those we love are and how hard it is when they are gone.

It’s been easier to deal with adults that leave us, my dad, my sister – but even when your children are adults it tears your heart out and leaves a hole too big to fill. Even when your life finds a new path, and that path is a good one, there are still times when the memories and the pain resurface.

I write this because life it too short to not acknowledge the pain, take a day with the memories, do something that honors that child (brother, uncle) that you lost and understand that it is still ok to grieve even though it makes those around you feel sad that they can’t “fix it”.

Chris was my life, especially after his brother died. He was a quietly wonderful man, he drew (I don’t have his drawings), he played Gemstone IV online incessantly, he was an actor (which is why he loved the online roleplaying). So I don’t have anything “tangible” from him, but great memories of his love for animals, his love for his nephew, his passion for acting.

Some of you met him in person or virtually. He was part of your lives too. Today we can grieve again and tell people to listen to the Doors (he was a huge Jim Morrison fan) and have a shot of Stoli…. and remember that life is just too short.

How the Internet – Not Yet the WWW – Helped Me Find Info on My Sons’ Disease

When my sons were diagnosed with Spinal Muscular Atrophy back in 1981 I had to pull the name of the disease out of the doctor over the phone. Chris was born in 1978 and was very sick when he was 7 weeks old which left him very weak. He regained his strength to a point and at about 8 months old he stopped again. In the meantime I got pregnant for his brother, we dealt with Chris like he was paralyzed, the drs couldn’t explain what was wrong. He started getting physical therapy. Danny was born, developed normally, no illnesses and at 8 months old stopped developing strength in his legs. Time for tests. They ran tests on both boys and we saw a neuromuscular specialist. That is the dr that I got on the phone to try and get the test results. We had been playing phone tag for a week and I was frustrated. He wanted to talk to both me and their dad at the same time, and I said no, just tell me what they have. Longer story short… he told me. (I later found out that when he explained the condition to another mother in his office one day that she physically attacked him. I understand that, but I was on the phone and wasn’t about to drive across the city to go punch him.)

I got off the phone with him an hour before a nearby library was closing so I headed out quickly and went through the card catalog (remember those?) The librarian wanted to help, she stayed open a little late while I did basic research. She found reference in a book and she gasped before she showed it to me. It said most children with the disease died before reaching age 1. I reassured her that one of my children was already 3. She sighed and found some more stuff, we copied it and she said I should search medical journals. I had access to a local University and started searching there.

Since I was computer literate, I did also did a library search online. At the time there was no World Wide Web, the internet was a black screen with green letters on it. I had found a medical library online that was very expensive to use during the day, but was much less expensive in the off hours. I printed out pages of results and called the main library that could then find the articles that were referenced and copy the pages of the physical journals. The online information was just abstracts, full text was like $300 an hour. The service I was using was KnowledgeBase and it was $20 an hour if I remember correctly.

By the next doctor’s appointment (this was a noted specialist in neuromuscular disease) I had copies of research that even he hadn’t seen. Flabergasted, he asked where I got this information and then asked if he could copy my research, and I handed him over 100 pages of medical journal articles and printouts of more abstracts. I still have a yellowed manila envelope of all those copies.

I never treated my sons like they were going to die, or pampered them. We took what we learned, we worked with an angel of a physical therapist, and we gave them the best life we could, because we didn’t just take the diagnosis and listen to the doctors and therapists and other parents – the ones that just blindly follow the “this is all we can do” philosophy. My sons never walked unaided, were never able to bear weight, but they were healthier than their peers because we did things out of the norm.

Danny didn’t die from his disease, he died in a car accident. Chris outlived most of his peers and had (a phrase I actually intensely dislike, but it’s all we have to describe it) – he had a great quality of life.

Fruit Smoothie with Matcha Recipe

1 small banana, cut in cubes
1 – 2 cups of Dole Frozen Fruit (strawberries, peaches, mango etc)
2 cups orange juice
2 bambo scoops of organic premium matcha
1 cup of your favorite yogurt (plain or flavored)

In your blender, blend slowly the matcha and orange juice or if you have a matcha bowl mix the matcha with a little water first to make it a smooth liquid. Add the yogurt, banana, frozen fruit. I like the Dole frozen fruit because it is real fruit in full sized cuts so you can see what you are adding, instead of canned mushy stuff. I start the blender on low, then progressively increase the speeds to medium and high. Let it blend until everything is nice and smooth.

The health benefits of matcha combined with the great flavors and health benefits of the fruits make this a great morning or mid afternoon pick me up. Matcha has 3 times the caffeine of coffee, but it is a level caffeine, not a caffeine that spikes like coffee caffeine does.

Let me know *your* favorite mid-day smoothie with matcha in our comments.

Some days are still really hard…

Today is September 18, 2009. Tomorrow my son Dan would have been 29. In the Septembers since he died (May 2002) I have had a variety of emotions. Some years I can celebrate and be glad he lived his life at all, other years I wonder what was the point. The first birthday after he died was the hardest. We won’t go there but know that I was smart enough to know that I needed to have people on alert to come to NYC to take care of Chris (Dan’s older brother) at a moment’s notice in case I felt the need to check myself into a safe place. I am not ashamed to admit that there were very, very dark days that first September. It was also the first September after 9/11 and even though I didn’t lose anyone that day, that day changed the direction of my life. But that’s a post for another day.

Chris was unhappy that I was unhappy because even though he grieved the loss of his brother, he also felt it was his responsibility to take care of *me* and felt he was failing. Grieving is not easy to explain and is different for everyone, and I tried to explain that to him. I worked for a doctor’s group at the time, so I was on a variety of medications, had started counseling and was “doing all the right things”. But I was overwhelmingly sad. Counseling helped, medications made me insomniac and zombie like. That September I found out what a nervous breakdown was. People talk about them all the time. Most never really experience one. Ok, so maybe we will go there. I started this post to just express that this year his birthday is pretty difficult again, not nervous breakdown difficult, but just difficult. Instead maybe I need to talk about that first birthday so that other parents that have lost a child unexpectedly can understand that it gets really bad, but then it gets ok, and then sometimes it’s bad, but never “that” bad again. Your child wouldn’t want you to “go there” repeatedly.

Daniel and I had a special bond. He was the baby. He was brilliant. He was intuitive. He was an old soul. Elizabeth (his oldest sister) understood it and was not jealous or offended. Chris knew it and acknowledged it begrudgingly. He knew he was special too, each in their own way. When I was pregnant for Daniel, I had been married for a few years, had Liz and Chris close together, then a miscarriage because of an illness. Stress had started to erode the marriage. Lots of disagreements, but I was the “good wife” and tried to keep things mostly to myself. My husband was possessive and I knew if I divorced him, he would try to take my kids. Daniel would be my child I told myself during the pregnancy. If my husband took the other two, I would have Dan.

I didn’t leave my husband while I was pregnant, nor did I leave him while the kids were young. I had a way to cope, I had children with health issues that took up most of my time, I was a wedding photographer and was out working on weekends. He worked evenings so there wasn’t as much stress, at least not too much to not be able to handle it at the time.

Dan was demanding, but not in a bad way. He didn’t sleep at night, his brother and sister had to be up for pre-school, so I basically lived on coffee for several months, in a rocking chair or with him in a sling. Liz and Chris were happy in those baby swings, where they would play and sleep and rock. Dan needed to be held. It was ok, it’s just the way it was.

Life happened, I got divorced, my kids had special needs so I was never far from them. Liz went off to college, got married, had a baby. Dan went off to college, Hofstra, for a year on his own. Chris and I still lived together, showed cats, he went to community college and acted. Then summer 2001, Dan got accepted to NYU Scriptwriting program, Chris got accepted to Hofstra. Wow, my kids would be all away from home. And I had to move because of it, but again, a story for another day.

Our Septembers, as a family, always started with volunteering for the local Labor Day Telethon. Our family was deeply involved with fundraising for MDA. Another facet that made Septembers hard later on.

Summer 2001, I had to move 2 handicapped young men to two different colleges. Because Dan had already been to Hofstra, Chris was all set with Dan’s old room, and an aide to help him out. They couldn’t get out of bed themselves, nor could they get themselves to bed. This gets to be important. Dan at NYU we thought was also all set, but when we got to the dorm, they had no clue what we were talking about. Aide? What aide? So I had no choice but to stay at the dorm “for a couple of weeks” while they figured out where to get him an aide.

Then 9/11 happened. Suddenly the health care folks in lower Manhattan had other worries besides finding an aide for a young man at NYU. So my life changed. I lived in a dorm room with my son for 9 months. Again, another story for another day.

So Septembers have some issues for me. Mixed joy that I had a beautiful son born to me in 1980, and the pain when that day comes each year and he is no longer here to celebrate it. The memory of many family activities that we did each year, the pain that we will never do them again.

I guess the point of this post is that there is no point. Some years I can breeze by his birthday with a tip of the hat and do something special (one year I sat in a hotel room and read all of his movie scripts and plays that he had written, some for the first time, others for the 10th. Some I had “written with him”, participating in the the writing process, others just knowing bits and pieces). Other years I can’t function, I can’t breathe, I can’t believe he was taken from us.

Chris died quietly 3 years after Dan. I had the same reactions after Chris died, but accelerated. A nervous breakdown, but no meds and no formal counseling. They didn’t work the first time. Friends got me through the dark days after Chris died, because Chris had gotten me through the dark days after Dan died. After all, I still had Chris to take care of. When Chris died, I had no one to take care of. Liz had her own family. She needed me as a Mom, but not like her brothers did. And she understands. She feels it too. She had a special bond with her brothers too, and especially with Dan. There was something about him….

There still is….

(this is one of the unhappy years, even though I have great friends and a man that takes great care of me, there is no accounting for grief and what it is going to do and when it will pop it’s head up.)

Hope my rambling somehow makes sense and helps another parent feel better, or at least not feel like they are alone in their grief.

The worst thing people ever could say (including Dan’s dad) is “get over it, move on, the past is done”.

This year his birthday is also Jewish New Year. Maybe tomorrow will be better than I think and today (this week actually) is just a “bad day”.

I have a dream…

I keep trying to make progress towards my own dreams and I get sidetracked. Sidetracked to work with paying clients, to work on websites that make me money (even though I built them because I loved the content on some and was using to help build my dream.), always sidetracked. Am I still afraid of my own success? My son Daniel stopped letting himself get sidetracked. He wrote and wrote and wrote. And then he died.

I am sitting here watching “Field of Dreams” and I think to myself, who writes this stuff? And I start to cry, because Danny “wrote this stuff”. No, not that movie, he wrote several movies and plays that aren’t so “mainstream”. He had been submitting several to various contests and agents when he died. For a while I got his replies, good and bad reviews. Then others knew he had died, and they just didn’t reply at all. Because for movie scripts and plays, unless the writer is available to write more, an agent won’t work with you. I was told straight out that no one would review his scripts because he wasn’t here to write more.

Maybe I’m afraid that if I realize my dream I will die? No, that’s not it because I am ready for that. My daughter needs me, and my grandson, but they didn’t need me like her brothers did. And both my sons encouraged me to go after my dreams. Danny said I should have a photography gallery. When he was at NYU there was a closed bookstore with great light and windows that he said I should rent. We would laugh about it because NYC rents are incredibly high and there wasn’t any way I could afford it. But he insisted that I should. He was serious. Of course it never happened and after about a year someone rented it and turned it into something. I actually need to go back and see what it became. I haven’t been there in a while.

What is my dream? To have a gallery where I showcase my photography and digital art. And I have started towards that dream. But it is only in the baby stages. It needs much more work and more attention and I have let it slide into the background as I took on more client work. I moved cross country last year about this time. The beginning of August actually. And when I got to my new home I said “I will be able to work more on my dream here”. But renovations and clients and other things took over my time and energy.

So after being distracted for a year it’s time to refocus. I preach it all the time to the people that work with me or work in one of the industries I work in. Focus on selling your designs, your images, your dreams. It’s time for me to do the things on my long term whiteboard, not keep putting them off because of the things on the short term whiteboards.

No, I won’t give up my clients or ignore them, but they can be attended to by other people on my behalf. I need to focus on getting my own body of work up and available and I need to also get Danny’s work up and available. After he died I sent his work out to several people that were going to read it and possibly help me get it “in the right hands” but I guess they were just being polite, since I never heard back from them.

I’m not in a position to produce an independent film so in the coming weeks I will investigate self publishing Danny’s plays and movie scripts, or converting them to a format that can be sold. He had a unique vision, what he wrote is mostly material that I would never even think of. Some of it is very bizarre and may not be what the public will be interested in, or there may be more people than I realize that will appreciate his writing and identify with it in some way.

In any case, keeping it on my computer and my daughter’s computer isn’t fair to Danny. He wrote a lot in his short life and it’s time to get it out where people can appreciate it, discuss it, love it or hate it. I’m actually not too sure how to do that. But I bet I will find a way.

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