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

  1. Said a prayer. Rosary everyday.

  2. Pingback: Tweets that mention On “Doing Fine,” “Being OK” and “Feeling Better.” | The Lewis Crusade -- Topsy.com

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