The Best Thing About Lyme

I’m not one of those people who say they’re glad they’ve had Lyme. No matter how many life lessons it teaches me, I’ll always wish this miserable disease had never become part of my life.

Lyme has stolen an unbelievable number of things from me, mostly the most important things. If I could sue Borrelia, I’d ask for millions upon millions of dollars in damages.

But the truth is that having Lyme can make a person better. And I’d say the best thing about Lyme is that it gives you tremendous incentive to be the best you can be.

It’s like an athlete training for the Olympics. Every day you focus on doing exactly what you have to do as well as you can, sometimes just so you can survive. When I was really sick, I used to divide the day into three-hour blocks. The goal was to make as few mistakes as possible in each block and perform each task as well as I could.

Those things were often pretty mundane. Make sure I had three glasses of water in the morning. Do a brief series of stretches, because that’s all the exercise I could do. Make sure I took my supplements exactly as I was supposed to, and at the times I was supposed to. Check mark in box on this protocol sheet. Check mark in box on that protocol sheet.

I’m in much better health now in, so all this isn’t as intense as it once was. But I’m still not fully well, so the incentive to max out in all realms of life is still there.

Probably the most important area is simply trying to be a good person. Whether you believe in God or karma or the universe of whatever, anyone with chronic Lyme who aims for 100 percent wellness is going to need some wind at their back.

Christianity teaches that what you sow you reap, and much of karma is about what goes ’round comes ’round. I believe in this, and I badly want to be fully well, so my incentive to goodness is powerful. Let that driver in the traffic jam in front of me? Glad to. Practice random acts of kindness? With pleasure. I’m no more perfect than anyone else, but trying to do the right thing has become a habit.

When your heart’s desire is total wellness, it does wonders for your discipline. Before getting sick, I ate a lifetime’s worth of junk food. Now you’re going to have to wrestle me down and jam that crap down my throat to get me to eat it. If I feel tempted, I remember how wretched I felt, month after month after month, and my appetite for sweets quickly fades away.

Exercise? Now I see it as a privilege. For a long time, it was a struggle to walk the eight steps from my bed to the bathroom. Compared to that, going for a pleasant stroll is bliss. Are you kidding? Fresh air. Sunshine. Seeing people, animals, trees, clouds. Unbelievable! After being released from prison Lyme, you start to see the world as a small child would.

Even something like cleaning the house. For a long time, I wasn’t very good at that. But now I know a few things about microbes, and frankly, I don’t want a lot of them hanging around.

The potential downside of all this incentive is that it could lead to perfectionism. But after doing a ton of Lyme research, I know that perfectionism is a stumbling block to healing. So I remember to take it easy on myself, laugh a lot, make time for relaxation, and meditate every day. Still checking off those boxes.

So like an Olympic athlete, my habit is to maintain a laser focus on my tasks. For Olympians, everything they do right day in and day out is one step closer to a medal podium. For Lyme patients like myself, the steps are much smaller but they lead to an even bigger goal – getting back a better life than you had before Lyme entered your life.

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5 things that got me out of Lyme hell

I can’t recall the name of the comic strip, but I remember this hairy little troll living in a dungeon. You’d always see him on his knees digging in the dirt, trying to make a tunnel out of prison.

This is what it’s like being stuck in the middle of a really bad case of Lyme. Every day you try to gain two inches of ground and try not to lose more than one.

I know. I was there. For a long time.

Bedridden week after week, housebound month after month. Things would occasionally get a bit better, and I could go outside and walk at the pace of the average 95-year-old for 20 yards or so, but rarely more than that. This went on for seven years.

How bad was it? First of all, my doctor thought I might be dying.

Beyond that, I spent years not being well enough to see friends, not well enough to go anywhere, not able to talk on the phone or read for more than 10 or 15 minutes a day, not able to watch TV for any longer than that, not able to do much of anything but lie in bed thinking mostly about ways to get out of this predicament.

Worst of all were the times when I wondered if I was dying.

After falling asleep exhausted, I’d sometimes wake up a few hours later and still be so exhausted I’d have to lie there motionless for a half hour or more to get the strength to make the seven-step walk to the bathroom.

There was one hot night when I felt I would pass out, and I staggered across the hallway into my father’s room to where the window air conditioner was.

So how did I get out a hole as deep as that?

I can think of five main things that made a huge difference. They are as follows:

PRAYER:

I come from a Christian family. My father is a preacher and has many preacher friends. I never stopped praying, and neither did my mom or my dad or their friends or people at my church. My name was on the church prayer list every week for years.

Several times prayer warriors drove more than an hour to pray with me, and one preacher friend not only prayed but fasted to try to aid my cause. I believe God answered those prayers because I started getting well very suddenly.

I started by making my walks a bit longer, and soon I found my legs had normal strength for the first time in nearly a decade. The whole process took several months, but I went from maybe 10 per cent of normal to about 70 per cent of normal.

Now I could see friends, I could talk on the phone all I wanted to, I could exercise, I got my driver’s licence back, I could do a whole bunch of things I hadn’t been able to do before. Bedridden no more, housebound no more. And I hadn’t made any significant changes to what I was doing.

This sort of thing just isn’t supposed to happen after seven years of being so low. Did God heal me? I believe he did.

BELIEVING I’D GET WELL:

I must admit there were days when I fought off feelings of hopelessness, but I truly always believed that I would get well. I told people that many times and could see from their expressions they didn’t believe me. Once I overheard my mother talking on the phone with a friend, referring to me as “an invalid”. My mother acted heroically for me in many ways, but I sternly told her never to call me that again.

I remember back in the dark days I bought a pair of running shoes. At that point, I couldn’t have run if the house had been on fire, but I did it because I believed I would run again. I don’t know the science behind belief very well, but I do know that many studies have shown that the mind is extremely powerful and so is simple belief.

HAVING SOMEONE TO LIVE FOR:

This may be a cliche, but having someone or something to live for can save your life. In many concentration camp stories, survivors point to that as what got them through.

For me that someone was my son, who was one when I got sick. My illness coupled with a stressful job made life extremely difficult for my ex-wife, and she decided to leave.

Because I couldn’t take care of myself at the time, I was forced to move in with my parents who lived three hours away from my son lived.  I tried every possible arrangement to stay in the same city as my son, whom I have always loved like crazy, but nothing worked.

I did not see my son for seven and a half years, but I thought about him every day. I’d call him on the phone regularly, usually on Saturdays. Friday was a total rest day. I would do nothing that wasn’t necessary, so I’d have enough energy saved up to talk for the 10 or 15 minutes I was able to manage.

There was no way I could give up. I had to see him again. There was nothing I wanted more than to be a proper father to him, and I was determined that was going to happen.

KEEPING IN TOUCH WITH A GOOD DOCTOR:

I was very lucky to find a skilled, compassionate doctor who had gone through a similar experience herself. When I still lived with my wife and son, she made at least a dozen house calls, and when I moved to live with my parents, we had short phone consults every two months.

There wasn’t a lot she could do from a distance, but she monitored my situation and made many helpful suggestions. Maintaining contact with her was vital for me because I knew that I wasn’t fighting this alone, and that an experienced doctor could guide my steps.

MOVING IN THE DIRECTION I WANTED TO GO:

I mentioned buying a pair of sneakers earlier. That was one example of keeping my brain thinking that I would get well and preparing my body for the day I would be well.

It also meant doing everything I knew of to live as healthy a life as I could, whether that meant only eating healthy foods, getting as much fresh air into my room as possible, being as active as I could be under the circumstances, or spending a lot of time thinking about what I needed to do step by step to get through each day as well as I could.

That meant if I felt well enough to walk for even 10 feet, then I’d walk for 10 feet. If it meant I could do a bit of light stretching without feeling negative consequences, I’d do a bit of light stretching. If it meant having someone come to pray with me even if I felt wretched, then I’d do that. Digging that tunnel out of jail bit by bit by bit. And, finally, freedom came.

 

Photo: Eric Davidson