I thought, as a child of the ghetto and the illustrious American welfare system (in the 80s, before the coveted food stamp swipe card) that I understood suffering. Ducking bullets, keeping side eyes on prostitutes and drug dealers and falling down in snow drifts without socks can teach you a thing or two about the struggle. But I have learned that there is an art to suffering that is specific to situation. When a new brand of suffering appears, you need a mentor to talk you through it.
My late husband, even in his absence, has taught me a lot about suffering through sickness. It is one thing to adapt in order to sustain one's self in the presence of external, aggressive danger. It is another thing entirely to adapt in order to sustain one's self when the body is the aggressor. So, what does it mean to suffer well when your own body is on the attack?
The first thing is to accept, not deny, what is happening to you. Though my husband had Sickle Cell Anemia throughout his life--since age seven--he was not diagnosed with avascular necrosis until shortly after we got married. We were sitting in the room together when the orthopedic surgeon broke the news via x-ray. In essence, once all the medical jargon was removed, the doc explained to us that all of Lawrence's joints were going to decay, starting with the hips (where we were) and continuing through the knees, elbows, shoulders... It was a lot to take in at once.
We sat down to discuss it when we got home, and I just threw out all the medicalese and broke it to him straight: "Eventually, you may not be able to move at all. You will need many replacements."
A man could have responded many ways to such news: rage, depression, extreme anxiety, bitterness... but what he said was, "Okay. Let's do what we have to do to make sure that Chad [our son] is okay." We decided to fight it, lose a joint, replace a joint, to keep Lawrence here as long as we could so he had time to fulfill certain goals for the family. He set out to improve himself without end, one career to another, until he found something that stuck: home health (ironically). Most importantly, he started explaining to our little boy, age seven or so--a little at a time--that he was dying.
I prayed for God to heal Lawrence, for many years in the beginning and much more at the end, but He didn't, so we had to ride it out, which leads us directly into my diagnosis for Lupus. Unfortunately, Lawrence wasn't here to hold my hand, but his investment in suffering was. I am in the hospital now, writing this blog entry, when just yesterday a team of doctors asked me, "How do you feel about all of this?" At the time I was writing my answers on a clipboard because the ulcers in my mouth were so bad that I hadn't spoken for three days. But, I knew how I felt. "This is what it is. Why should I panic when this is what has been dealt to me. If God does not heal me, I must ride it out."
The second thing is to accept the level of illness. This must be done before you can really defend yourself. I am typically terrible at assessing my own needs, so it took me weeks to understand that the referral made for me (set for two weeks after I arrived here at MUSC in Charleston) was too long to wait. I had to do what I did for my husband: find the best specialist for this ailment and go to his or her practice. That is how I ended up sitting in MUSC's Rheumatology department, and that is how they identified my immediate need to be admitted into the hospital. I can't say I decided that on my own, since I thought I was already defending. I changed my diet. I prayed and fasted. But, I hadn't really decided to defend at all because I hadn't asked for expert help. I looked like a fighter, and I felt like a fighter, but I couldn't be... I wasn't prepared to fight such a bout without the right counsel.
The third thing is to fight the fear. With a devastating diagnosis comes the fear: fear of the pain, fear of the consequences, fear for your family, fear for your child(ren). None of these fears are going to help you fight at all. They deplete you and put you at a terrible disadvantage because you need your mind to engage the disease. In order to find your new normal (if that is required), you will need your whole mind, your whole self to do it. The gaping ulcers in my mouth made it very hard and painful to swallow, but I had to swallow water. I had to swallow needed medicines. The fear of the pain of swallowing could have kept me from doing what I needed to do, but I had to do it. I couldn't let the fear stop me for completing the course.
Also, I'm going through some sort of career evolution. I don't know WHAT that is going to look like; it is a struggle. But, I have to moderate my stress levels. I have to make changes. I can't be afraid of that. It must be done.
Finally, call your people. You might be surprised at who your people are. There are going to be people that you call that you SWORE would show up in your time of distress, and they won't. Then, there will be people that you never knew loved you so much. You cannot live out the struggle of illness on your own in prideful isolation. Say your apologies and call for help. You need it. You will need it. Your suffering is already public. How much more public are you afraid it will become? You are sick. It's pretty obvious. Call your people. Let them love you while you fight.
These are certainly not all of the steps, but herein lies a good number of them. I realize that I haven't quoted any scriptures here, but if you want one that has always motivated me, here it is: "Endure hardness as a good soldier of Jesus Christ," II Timothy 2:3. In my mind, it plays like this: "Endure hardness like a good soldier," because life is hard. Don't let anybody fool you. Some things happen that will require all of your resources--financial, mental and spiritual--to survive. When the hard times come, you have to show up to the front line with your "Hurrah" in your mouth. Decide ahead of time that your "Hurrah" is with you. I believe God is with you. I realize that some of you don't believe in God, but at least try out some of those Biblical principles. I assure you, they work for nonbelievers too. That's why they become believers. ;)
Love to you from a hospital room in Charleston, South Carolina. I hope this moves you.
-Terri
No comments:
Post a Comment
Talk About It. ;)