Two months and counting...

Last week I intended to give a two month update. I wrote a blog post later in the week, mentioning that I started my two-month anniversary with a blood draw at a local lab and then spent the rest of the day in bed with a terrible migraine. As I read over it, I thought it sounded like I was complaining. Anyway, who cares if I left the lab with with matching needle marks on each arm? Who cares the UPS drop off nearby doesn't open until 8:30 and that due to my driving restrictions, the tubes I must mail to Cleveland Clinic didn't make it out until lunchtime? Does it really matter in the scheme of things?

As the week went on I felt better. I still have an annoying dry cough but there is nothing to make me concerned otherwise. I am breathing well and completing every day tasks. The body aches and the side effects from the medications are tolerable. As I resisted publishing my blog post, I learned of two new deaths among those on my support group. And, one of my best friends is in the hospital again, with health issues so few can imagine. The blood draws? Over it. The migraine? It dissipated. And, I now know not to show up at the UPS at 8 a.m.

And, what about that update I promised? The coordinator called later in the week and said the bloodwork is fine and there are no changes at this time. I can continue complaining about the small stuff if I wish.

No Whining

There was a time I was too busy. Too tired. So sore. I complained about the daily hurdles of life--grocery shopping, cooking, cleaning, etc. I kept thinking that I had to push through it so these things would get done. Because, well, you know, who is going to do them if I don't do them? If I didn't sacrifice my time and energy, I would have piles of stuff, unopened mail, dusty corners, un-returned library books, and dirty dishes. I'd have no groceries and nothing to cook and my family would suffer.

I complained. Yet, now I realize there were very few times I had ever really felt pain I couldn't work through. And, I never knew what fatigue really was. See, if I had really known what pain and fatigue was, there would have been no working through anything. If I was truly in pain and that tired I wouldn't have been able to cook, clean, or go grocery shopping.  Because, when it gets down to it, true pain and fatigue stops you in your tracks. You cannot do what you want to do. And, you cannot do what you need to do. Things pile up and don't get done. Meetings go unattended. Events and holidays never make it on the calendar. And, even though one's brain knows these things have to be done, or should be getting done, there is no time or energy to sacrifice. All time and energy has to be focused on just surviving the day, trying to accomplish the basics like brushing one's teeth, eating, showering, and breathing.

When I am well enough I never want to catch myself whining about the daily hurdles of life again. Please stop me if I ever exclaim, "Oh, I'm just so busy." And, remind me that if I'm that busy, the universe is probably trying to tell me something.

Two roads diverged in a yellow wood...

Two roads diverged in a yellow wood and neither will lead me out. One goes straight to the cemetery... so I am taking the other one. I will journey on as long as I can and hope for a successful surgery and a speedy recovery. Transplantation is not a cure. But if all goes well enough, it will give me the opportunity to live for several more years.

A few more years in these woods.

In an earlier post I mentioned the amazingly talented Charity Sunshine Tillemann Dick, who has had two double lung transplants. After her first double lung transplant she did everything asked of her. She took her medicines on time, avoided crowded spaces, and did everything suggested to reduce her risks of rejection and infection. But, when she went for a regular checkup, expecting a clean bill of health, she learned her body was rejecting her new lungs. She was angry. "I feel like I've done my time," she wrote in a blog post, "and I was looking forward to doing some more pleasant time in the the coming years."

Charity explained that even though we do something well or we get through something challenging, it doesn't mean the work ends or that there won't be other challenges. She continued, "While I might not be "out of the woods," there is more beauty and love inside of them than I could have ever anticipated." Charity is right. Even though the road has been pretty rough so far, I have learned so much and have met some wonderful people. And, since I will never be out of these proverbial woods, I won't mind setting up my abode here for the rest of my life. I'll have plenty of visitors and some great neighbors.

A filter...

In her book Living With the End in Mind, Erin Tierney Kramp explained that before she was diagnosed with a life-threatening illness, she and her husband Doug "generally felt caught up in the whirlwind" of their lives. After diagnosis their various responsibilities did not disappear but they "had a new filtering mechanism for deciding what to take on each day." By acknowledging death and living with "the end in mind," Erin felt they had grown closer as a couple and became better parents. "We wish everyone could get the perspective of having a life-threatening diseases without having to suffer from the disease itself," she wrote.

Despite the mourning and the loss, I am experiencing a paradigm shift that feels important and healthy. It has a lot to do with the filtering system Erin explained. How I view the world, my life, and everything around me is affected by this disease and my current state. It goes back to the Spoon Theory I explained in an earlier post. Once I faced a limited amount of spoons--time, energy, resources--I had to focus. I had to slow down. I had to prioritize. I had to accept help. It is then, I realized, that I was watching the whirlwind, for once, standing a far distance from the mighty winds. And now I realize that some of that stuff blowing about, really didn't matter.

Now I have a filter. A gift, really.