Monthly Archives: February 2013

On “Doing Fine,” “Being OK” and “Feeling Better.”

No, I’m not.

Never have.

Never will.

And “never will” doesn’t mean I don’t believe God may give me a miracle. He has given me many miracles, which is why I’m still alive today. However, I consider everything a miracle. I consider my aortic dissection itself a miracle.

Thank You, Father.

Forgive my ingratitude.

But as for “doing fine”? “Being OK”? “Feeling Better”?

Those are abstract concepts that have more to do with the questioner’s peace of mind than the respondant’s situation.

People want you to tell them you’re “fine” so *they* can stop worrying.

Problem is: the problems are here. Some of them have always been here.

I took a gamble. 14.5 years ago, I had a surgery that I didn’t really want to go through with. I had prayed for many years for God to miraculously intervene and prove His power before the doctors could do anything. I worried that, if I went through with the surgery, I might be denying God’s power to heal me. I just wanted to go to Heaven, though I also knew that I wasn’t spiritually ready yet, but I had to keep up appearances.

After the surgery, they told me I’d “be fine.” They told me I could stop living the way I’d always done and start exercising, and enjoying life a bit.

Actually, after the surgery, the surgeon told my parents that, now that the aorta had been grafted once, I could have a dissection at any time. I had already known this from my reading and paying attention at all those NMF conferences my parents took me to, and it was one of the reasons I didn’t want the surgery.

However, I bought the life of “You’re fine.” I got an apartment on campus for my senior year. I began walking for an hour a day. I really was enjoying it.

Then I developed some tearing around the stitches of my valve, and was back to sedentary.

Then those tears scarred over, and I sought out equilibrium. Still doctors, and my parents, encouraged me to walk, to try things, to not use the wheelchair, etc.

I met Mary.

We had kids.

In those early years of our marriage and parenthood, I was the healthiest I’ve ever been. I still had chest pain and stuff, but everything was remarkably stable, and I had more stamina than I had ever had previously or since.

I even made it to full time employment, and Mary got to be a stay at home mom for over a year.

I pushed myself too hard. Icarus flew too close to the sun.

At first, even before that full time job, I started having really bad headaches, with numbness in my face and legs. There are neurological problems associated with Marfan syndrome, so I went up to Hopkins to see a neurologist and a spine expert. They said my problems were not consistent with dural ectasia, and my tests did not show any evidence of it.

As time went on, and the headaches and spells became more acute, I realized they were TIAs–transitory ischemic attacks. I tried to get checked for those, and had a brain CT which showed nothing. I was told “It’s just stress. Get better sleep.” Eventually, I found out that TIAs which recur daily like I had them were more indicative of a brain aneurysm, but I also knew brain aneurysms were hard to detect. My cardiologist agreed and suggested we start medicating as if I had one.

Throughout this process, in 2006, I also developed a new aneurysm in my thoracic aorta.

When an angiogram in 2009 finally found the brain aneurysm, it also found a tortuous and redundant carotid artery and a “venous ectasia” (kind of like an aneurysm, only in a vein and not an artery). The more I researched these, I figured out my TIAs were actually caused when my BP was high, and blood was trying to force itself through the maze of my right carotid artery (like water through a hose with a kink in it).

And, after about 5 years of being relatively healthy, I had declined a bit more quickly than I’d ever anticipated.

Our prayer had always been for me to find full time work, so Mary could stay home with the kids and we could hire some kind of assistant, whether someone to assist with the housekeeping,the kids, our household management, or our medical concerns.

I worked and worked at various part time jobs to try and make ends meet. I overworked myself. I lost jobs either because of my health or working too many jobs at once or both.

We constantly struggled. We accumulated debt. We accumulated debt because I wasn’t strong enough, especially in a townhouse, to take care of the kids and the housekeeping and cooking and work all these jobs. So we ate out far too much. We accumulated debt because, while our income was sufficient to pay the monthly bills (including any eating out), life is more than monthly bills. Cars needed repaired. Medical bills needed paid. Relatives wanted us to visit. Job interviews would present themselves. Car taxes.

Then I would not get enough classes, or I’d lose a job, or whatever, and our income would drop. Each of the last 3 years, I’ve ended up without any classes in January, and the tax return money–intended to get ahead on our debts–ended up going towards living expenses.

But we kept trusting things would work out. I finally had an interview for a potential full time job. They loved me. They told me I’d start in October. We found a fantastic handicapped one story ranch to rent and moved so I’d be ready for the job. The job didn’t materialize. They froze the position.

So here we were, in a new home that solved a lot of our problems in itself, yet we had several others to deal with.

Financial security had been in our grasp, and we lost it. That was OK, we said, because my current jobs were bringing in enough money. Then I didn’t get assigned as many classes because of restructuring. So I applied for two more adjunct jobs and got them, just before Christmas, one of them on campus.

Then my aorta dissected.

So, how am I doing?
1) My aorta is stabilized, but that doesn’t mean I’m fine. It means I have to do everything I can to avoid stress and avoid raising my blood pressure so my aorta doesn’t dissect again. It means I’m going to be on heavy blood pressure medicines and pain killers. Now, instead of 8 diagnosed potential causes of sudden death, I now have 11.

2) I am giving up driving. That is going to considerably cripple my family, but we’ll get rid of our second car, which will reduce our monthly bills by over $500.

3) I am going to appreciate life a bit more and stop putting off important stuff. I’m going to stop hoping for something better and make do. I’m going to trust God to help us with the bills.

4) I’ve always needed help with the kids, but hopefully, if people don’t buy into “I’m OK,” they’ll be willing to give it. This drastic change in the situation has us considering Catholic school–if we can get some kind of charitable scholarship. Otherwise, I’m going to need volunteer help with the kids, at least a few hours a day. In the meantime, the grandparents are helping out.

5) After we find some ways to seriously cut corners, I’m going to try to keep teaching a minimum number of classes, and I’m going to start applying SSDI. In the meantime, I’m going to apply for South Carolina’s Working Disabled Medicaid program, since my dissection qualifies me for both programs.

6) Sometime in the next 3 years, I will need a replacement of my entire aorta. It may be in 6 months; it may be in 3 years; it may be next week.

7) I’m happy and content and at peace with God and my family. Other than my parental concerns about money and my children’s education and care, I have no worries.

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Have a Heart: Unsung Heroes, then and now

Bill Feinstein wasn’t famous.  But he was one of those big heroes within the Marfan community.  He was a regular poster on Marfan List, and a valuable resource.  When I first “met” him online several years ago, he had already had several aortic graft surgeries, and had small dissections in the remainder of his natural aorta.  Bill had been through it all, and was in a situation where further heart/aortic surgery could result in almost guaranteed death or paralysis.  Bill passed away on Sept. 14, 2008, during surgery.

My parents and I knew Wendy Weiss back in the 1980s.  Here’s an article written about her in 1986.   She’s still kicking.  I went to an NMF conference with my parents in 1986 or 87 and heard Wendy speak: “I get so sick of having to get up off the operating table and tell the doctors what to do!”

Marshall Weiner passed away many years ago–sorry to say  I can’t remember when.  I met him at the above conference, where he gave me a free hat.  He was in charge of selling merchandise at a table.  They had buttons with a sign saying, “FREE Take one.”  I assumed that applied to everything on the table, so I grabbed a National Marfan Foundation baseball cap and walked off with it.  My parents scolded me, but Marshall laughed and said the sign was confusing and let me keep it.

Have a Heart: Actor Vincent Schiavelli

Vincent Schiavelli was not only one of our most noted “celebrity Marfans,” but in the Marfan community he’s known for his generosity in reaching out to other Marfans, particularly children, and giving them his time and attention.

May he rest in peace.

This should be the Marfan theme song.

When I was a kid, I suggested that the theme song for kids with genetic disorders should be “Three Blind Mice.”

Seriously, though, Rachmaninoff’s “Rhapsody on the a Theme by Paganini” (Same theme on which Andrew Lloyd Webber’s _Variations_ is based) should be the Marfan theme song: a Marfan writing a variation on a work by another Marfan.

Have a Heart: NMF Statement to SSA, updated

Back in the mid-1990s, the Marfan community was excited that Marfan syndrome finally made it into the Social Security Administration’s official list of disabling conditions.

However, the listing was for untreated aortic dissection. In other words, your aorta dissects, and you’re eligible for Supplemental Security Income (SSI) or Social Security disability for the day or so before you die or have it operated on. OK, there are some people who have dissections that they have to live with for indefinite periods of time, for various reasons.

However, the point is that it’s a very limiting criteria. This is a written statement to the SSA, dated, November 28, 2007, by one Dr. Josephine Grima, representing the National Marfan Foundation, asking the SSA to take into account the systematic effects of Marfan.

The following two sentences sum up my life:

Each major “incident” translates into non-productive years, disrupted or discarded careers, lost wages and assets, and an emotional and psychological disconnect and alienation from society. Couple this with the specter of early death and the resulting angst and pervasive depression that ensues further
debilitates the patient.

I most firmly believe that the worth of a person has nothing to do with how much money he or she can make, or with utilitarian contributions to society. When it comes to my personal life and spiritual life, I am quite happy. “You’re rich in the economy of grace,” as a friend recently said to me.

However, when it comes to survival in this cutthroat world, it’s a different story. I’ve worked hard all my life to always come just short, always not having quite as many qualifications as other candidates for scholarships, awards and jobs, always getting high praise for my intelligence and work ethic but never quite able to advance beyond a basic level job when I do have work, and always getting the riot act when my disability invariably gets in the way of my work.

A year ago, I began working on the _Hide Me In Your Wounds_ CD in the hopes of taking my career into my own hands. Self-marketing has proven challenging as a I have to work so many hours as an adjunct college instructor to make ends meet, and I thought I could have success with the “guerilla”/”buzz” marketing approach through my blog and Facebook.

Please download Hide Me In Your Wounds today.  The more copies I can sell through direct marketing, the more money and time I can spend on advertising, publicity and working on getting some of my other works published.

Have a Heart: Paganini Could do amazing things with the violin because he was a Marfan

Have a Heart: Vincent Schiavelli, Part 2

Contributed by Maya Zimmerman (written on 12/26/2010):

Today marks the 4th anniversary of Vincent Schiavelli’s death. For those of you who never had the pleasure of meeting him, he was extremely active in the Marfan community and particularly loved working with the teens. He was also a renowned character actor and appeared in such movies as One Flew Over the Cuckoo’s Nest and Tomorrow Never Dies.

I remember when I first met him. I was 14 and it was my first conference. Friday night all the teens (all 15 of us) were supposed to go to a Salvador Dali exhibit. I didn’t feel well (and was mostly just nervous…I’d never been around so many other Marfs!) and decided not to go. Vincent offered to take me in a taxi so I wouldn’t have to walk. I was really taken aback because I’d never had anyone offer a kindness like that to me before, to be totally willing to accommodate Marfan. But, the nerves won out and I said no thanks. I think not taking that taxi ride may be my one life regret, lol. Anyway, for the teens he was a gift: both serious and irreverent and he pushed us to view ourselves as capable. Whenever I see him in Tomorrow Never Dies I smile and I wish he was still here to see how much the teen program has grown.

~ Maya