Life changed in an instant
Rare disease takes Jim's mobility, not his incredible spirit to survive
|Working out to maintain and gain strength is a commitment Jim has made to his health and well-being. photo by Randy Jorgensen.|
June 11, 2008Jim Belz is looking for hope. He's looking for answers.
Jim's life changed in an instant. A rare disease, Idiopathic Transverse Myelitis, has left him almost completely paralyzed from the chest down. His world has changed forever. Yet he is determined nothing will paralyze his spirit. His courage is helping him survive, helping him cope with the awful hand he's been dealt.
"If you don't have a good attitude toward this thing, well then you're just in a wheelchair, like the others and you're just taking up space," Jim says, as he positions his walker to take a seat in our office, a slight grimace on his face from the constant pain.
"There are a lot of things I can't do anymore, but you have to do what you can," he says. "I won't become someone who just gives up, I won't..." he tells me.
Jim is in the fight of his life.
Getting to know Jim
Jim Belz, 69, is a longtime resident of Imlay City, having moved here in 1974 from Northville. Jim managed the D&C Store in Imlay City for 19 years and had worked with the company since 1961. D&C Stores closed in 1993, giving him more than 32 years with the company. Jim also served on the Parks and Recreation Board for Imlay City for many years and logged over 20 years as a member of the Imlay City Schools' football chain gang.
Jim and his wife Carol, have two children, Jodi and Eric. Jodi lives in Riley Twp. with her husband David and owns the Dollar Store in Port Huron. Eric and his wife Cindy live in Richland, where he teaches and coaches in the Gull Lake School District. They have four daughters.
Jim is a 1957 graduate of Howell High School, where he excelled at football, basketball and track. While in Imlay City Jim also volunteered his time as a high school track official and umpired softball and baseball games.
Jim was always very athletic, sports came easily for him and he enjoyed a variety of them. A big man, 6'2" or so, with broad shoulders, Jim's one of the few who have a perfect 300 to his name in bowling and a hole-in-one in golf. And those things are important to him.
Yes, it's safe to say, Jim likes his sports, all kinds of sports. And he was good at most all of them, better than most.
No known cause or cure
Idiopathic Transverse Myelitis (TM) is a vicious disease. There is no known cause and no known cure. When it attacks it causes a swelling of the spinal cord, creating nerve damage and paralysis from that point down. For whatever reason Michigan ranks second nationally in the number of TM cases, only New Jersey has more.
"I have no idea how I got it, no one does," Jim says sternly.
"There is some thought it may be an airborne virus, I don't know."
Jim was diagnosed with TM three years ago, at the time only two out of a million contracted the disease. Today those numbers have risen to ten in a million. As rare as it is, it's a harsh reality for Jim, his wife and his family.
There are only ten hospitals in the United States that care for patients with TM. The closest to Michigan is in Cleveland. Dr. Douglas Kerr, head of research for TM at John Hopkins in Baltimore, is working tirelessly for answers. To date researchers have not come up with the cause or a cure.
Started losing balance
"In May of 2005 I started to have balance problems," Jim recalls.
"It was an uneasy feeling and I couldn't get rid of it, so I went to the hospital. The doctors thought it was perhaps an inner ear infection so they sent me home," he continues.
"The hospital ran a lot of tests, but they didn't know what was causing my problems. Three days later I was back in the hospital, paralyzed from the chest down."
Now imagine if you will, here is a big strapping, athletic man in his mid-60s, very active and very energetic, he goes into the hospital for a balance problem on May 25 and by June 1 is paralyzed from the chest down. Stricken with some rare disease only two out of a million will get!
It's heartbreaking. It's unfair. No known cause, no known cure, merely left in the wake to do the best he can.
After many doctor visits, and many, many tests at hospitals all across the state, Jim finds himself confined to a wheelchair.
"I had so many questions and there were no real answers," Jim tells me.
"You can't feel sorry for yourself, if you do, it will take over even more. You just can't do that, you just can't let it happen. You do what you can do."
Jim spent most of the remaining year in a wheelchair. He was assigned to in-patient rehabilitation at the Marlette Hospital. Marlette was the closest rehab center to him.
"Marlette is a great facility, I have a lot of respect for it and for the people who helped me up there," Jim says.
"I learned a lot, a lot about getting myself around, learning to use a walker and learning to cope without the use of my legs," he says.
Jim was making progress in Marlette. It was slow, but it was progress. He had developed some fond memories and friendships in Marlette. His insurance was running out, he would soon be on his own. There was little anyone or any hospital could do for him.
Any hope he had to regain some of the simple pleasures of life, golf, bowling or a simple stroll through town seemed to be slipping through his fingers.
"I learned there are a lot of obstacles out there for people in my situation, more than I ever realized, more than I ever knew existed," he explains.
A crack in a sidewalk, a step too high, a door too narrow. Obstacles that were never noticed before.
Help of others
Jim was dependent on others, he didn't like it much, but it had become his world. "My wife didn't get any breaks either, cooking for me, caring for me, and taking me to doctor appointments, it was a great deal of strain and stress on her too," Jim says regretfully.
Yet, giving up was not an option for Jim. He was determined to gain some independence. He was determined to make a better life for himself.
Jim had always taken good care of himself and worked out regularly in a local gym. He decided to go back to the gym thinking the acitivity and the weight training may help.
In the winter of 2006, his friend Joel Siegler called him to see how he was doing. Joel knows a little bit about what Jim was going through. You see, Joel lost his legs in a farm accident 25 years ago. He encouraged Jim to stay active and offered to give him a ride to the gym.
Jim took Joel up on his gracious offer.
"Joel understands," Jim tells me, "he knows what it's like. I was very appreciative. He was very encouraging and I needed that, we all do."
Three days a week, just like clockwork, Joel would show up at Jim's home, pick him up and take him to the gym. It went on like that until summer, that's when Jim had hand-operated equipment installed on his vehicle so he could drive.
"I had to learn all over again to drive, it took some getting used to. I went down to the school parking lot and practiced and practiced," he laughingly recalls.
Since then Jim has been driving himself to workout four days a week, and to his doctor appointments and to the coffee shop.
"I think it's really helping me, I feel better and I'm up to 20 to 30 minutes on the bike. I do a variety of leg exercises and a few upper body workouts to increase the strength in my arms," he explains.
Playing golf again
Jim has improved, through sheer determination, to the point he has picked up the golf clubs again.
"I miss golf, I miss the guys and I miss the senior scrambles," he says.
"Balance is a major problem for me, but I get out once in a while to play nine holes," Jim states.
"It's nothing like it used to be for me, I just swat at the ball really, but I'm getting better," he goes on to say.
"My golf buddies at first let me tee off from 150 yards
out, I got a little too good at that distance so they moved me back to 200 yards, then 250 yards and the last time I played, they told me to go to the red tees," he says smiling from ear to ear.
"I tried to play 18 holes once, I fell down six times, so now I only play nine holes," he explained.
"Last year I only fell twice, I'm learning to stabilize myself better now."
Helping others with TM
Jim endures constant pain, he can't escape it, 24 hours a day, seven days a week.
He describes it as if he's on fire, a never ending burning sensation from the chest down. Medications dull the pain, but they also can create a whole host of other problems. Jim spends a lot of time getting test after test and each test requires blood draws, since one treatment causes complications for the next treatment.
Jim keeps trying, anything, anything at all. He uses acupuncture, he is routinely monitored for pain by his neurologist, practices remedies from a naturalist and visits his local doctor regularly.
"I offered myself to Dr. Kerr in Baltimore to try some experimental treatments, but I was turned down because of my age," he tells me.
"I'd be a guinea pig, if I thought there was a chance it would help. Even if it didn't help me, maybe it would help someone else."
Most days are full for Jim now, he's either at the gym, or having coffee with the guys. Or he's keeping himself busy, tinkering with his walker, so he can maneuver around the golf course better. He recently rigged one walker with bigger wheels to handle the cracks in the sidewalks so he doesn't stumble. And he rigged up a seat on it so he can rest when he tires.
"It helps me pass the time," he says.
When Jim isn't adding features to his walker, he's talking to others with TM on the Internet. He spends as much as three hours a day on the computer.
"I have friends all over the United States, Canada and as far away as India. Like me, they are all looking for hope, we encourage each other, share information or sometimes the latest joke. We all may be grasping at straws, looking for anything that might help," he states.
Jim estimates he has 30 or 40 people he chats with on the Internet.
"Some people have totally given up and if you do that, well, TM wins. I encourage them to keep trying, sometimes just lifting your toe is a major accomplishment if you have TM and you want to share that news with others."
Jim never imagined anything like this would happen to him. How could he?
Jim Belz is not going to give up anytime soon, you can see that in his face and hear it in his voice.
Jim's courage and determination are to be admired. He has come face to face with his disease and is willing to do battle with it.
Editors Note: If you would like to learn more about Idiopathic Transverse Myelitis or make a donation to help in the research of this horrible disease visit:
If you would like to offer encouragement to Jim Belz, visit him at: firstname.lastname@example.org