With Every Storm, There Is A Rainbow

Life happens. And sometimes life is hard – maybe even devastating. Thunderstorms, just like life, can be violent, destructive events. When everything calms down; however, more often than naught, a beautiful rainbow appears. Sometimes you have to look a little closer, a little harder to see it. Here is a “rainbow” from a family in the Oklahoma Panhandle. 

“We were boyfriend and girlfriend in junior high – he gave me my first kiss,” said Tammy McKinley Wilson of her late husband, Tim. “We each had other boyfriends and girlfriends after that, but we started dating seriously in high school. It was my junior year and his senior year. We got married right out of high school in 1977. We were married 37 years.” 

After their marriage, the couple moved from Hooker, Okla., to different places due to Tim’s work with a phone company.

“We had a great marriage,” Tammy said. “He was a great father, husband – and just a joy to be around for everybody that was around him.”

She was first drawn to Tim because he “was cute”, and he was a musician.

“He played drums,” she said with a slight chuckle. “He was kind of a wild boy. When he would play the drums, the girls would just kind of surround him. I think they all liked him. He was funny. He was cheerful and happy. He was always smiling in public, so that drew people to him.”

One day, a “thunderstorm” hit their world.

“He started tripping a little bit,” Tammy explained. “It seemed a little bit like he was clumsy and he had never been that way before. He started falling and then we noticed one of his legs was a lot thinner than his other leg, so we went to the doctor to see what that was all about. It was obvious that something was going on.

Tammy said medical professionals began testing Tim. It was not a quick process. The answer – Amyotrophic lateral sclerosis, sometimes called Lou Gehrig’s disease or ALS.

“They started testing and it was months and months of testing before we got a diagnosis, because there is no definite diagnosis for ALS – they have to figure out what it’s not,” she explained. 

The couple, who were living in Bartlesville, Okla., at the time, were referred to Mayo Clinic in Arizona.

“We got the diagnosis in April 2010,” Tammy said. “We spent two days at Mayo and we pretty much already knew then what it was. The neurologist in Bartlesville had already warned us, but they wanted us to be sure by going to a specialist. There just wasn’t anything else – they had already tested him for everything, so they were pretty sure it was ALS.”

Tammy had already begun researching Tim’s symptoms on the Internet before they received the “official” word.

“I was constantly looking up his symptoms,” she said. “So, I was pretty sure that’s what it was. He had muscle twitching, muscle cramping and weakness and it was starting to get more in his leg. He was starting to get winded more by the time we got the diagnosis. He was getting a lot more symptoms, so I wasn’t surprised.”

Tammy said she wanted to know all she could about ALS, as fast as she could.

“That’s good and sometimes that’s bad to search on the Internet,” she added. 

Tammy said she thinks Tim believed his symptoms were from something else.

“When we went to Mayo, I think he thought they would find something else and it wasn’t going to be ALS,” she said. “When you read about ALS, it’s horrifying, because there is no cure. You’re probably going to live maybe two to five years. It’s not a good diagnosis.”

Tammy said because of her research she was “somewhat prepared” for the answer.

“At the same time, when they actually say that is what it is – any tiny bit of hope it isn’t is gone,” she said. “Seeing him have to deal with the fact it was ALS was heartbreaking, He still had hope it wasn’t.”

There is no treatment for ALS itself.

“There are treatments to make you more comfortable,” Tammy said. “He had the muscle twitching and cramping that was really bad – they had medicine for that. There was medicine they were trying that might prolong his life a little bit. It was helpful, I guess, for some people, but mostly not. There is still no medicine that will really help with ALS. They can just treat your symptoms.”

During the journey back to Oklahoma from Arizona, the couple realized they needed to take care of some things.

“We knew on the way back he needed to get his life in order,” Tammy said. “His money, seeing people, taking trips if we could – all that stuff needed to be done as soon as possible. We had time to face the facts.”

Tim’s job for the phone company, where he worked outside climbing poles, was no longer an option.

“All of his work was outside,” Tammy said. “He loved being outside and working hard.  He had to retire right away, because he wasn’t safe. Once we got the diagnosis and they knew he had been tripping – they didn’t want him climbing ladders any more or stepping out of his truck – he might fall.”

And then the rainbow started to shine through.

“Within a few days he was back to his old self,” Tammy said. “He was smiling and saying, ‘okay, let’s be happy if we can’. So, that’s what he did.” 

The two withdrew Tim’s money from his retirement, used some savings and bought a camper.

“It was really nice, brand new,” she said. “We would have never done that before, but we said, ‘let’s go for it.’ We were going to start traveling a little bit. It was only around six months though, that he was able to get in and out of it.”

The camper was sold, but the couple did not give up.

We did take a trip to Alaska – a cruise,” Tammy said. “He was already in a wheelchair by then, but we did do that. And that’s really about all we had time to do before it got bad enough where it was very difficult to travel. We got his affairs in order. A will, a living will….. All those things were done right away. Then it was just day by day – it was, let’s just get through this and live.”

Tammy was Tim’s wife and his caregiver.

“I did it all,” she said. Towards the end, we did get some hospice to come in and help him with showers, but other than that I did it. It’s kind of a blur now, because it was so much. I didn’t want anybody else to have to take care of him. I was there, and I didn’t work, so I did what I did. If I had to do it again, I think I would have given more care giving to somebody else a little bit, because at one point I became the caregiver and not the wife anymore. It’s difficult to be the wife and not just the caregiver. Anyone who is a caregiver full time that kind of happens to.”

Throughout his health challenges, Tammy was going through a wide range of emotions.

“I was very sad and did not want to say goodbye to him ever, but I knew it was going to happen,” she said. “Then I was mad. I was grouchy, frustrated….. probably because I was trying to do too much. I didn’t sleep very much, because when he got worse, I had to turn him at night. He was on a breathing machine. I was always terrified the machine would go off and he wouldn’t be able to breathe. I didn’t sleep well. It broke my heart to see him that way.”

It was also difficult for Tammy to see the love of her life watching her.

“The hardest part was watching him watch me do so much, because he hated that,” she said. “We had always shared the yard work before. The driving and everything - he usually did all of that. He had to watch me do all of that myself. You could just see it killed him. I was sad for him to have to go through that.”

The couple’s two-year-old granddaughter came to live with them, shortly after they received his diagnosis.

“I was taking care of Tammy Jo and taking care of Tim at the same time,” Tammy said. 

The rainbow started to shine once again.

“It was almost like she was a gift to me,” Tammy said. “I’m thankful she came when she did. I think I would have been much worse without her. She kept me going because I had to. I had to move on.” 

Tammy Jo and Tim himself were the rainbows in Tammy’s storm. His attitude in light of his challenge was an inspiration not only to her, but to others as well.

“He definitely had a better attitude than me,” Tammy said. “There were times he seemed sad, but you had to look for it outwardly. He was still smiling, laughing joking, trying to be as upbeat as possible. It was amazing he could keep that attitude of, ‘I’ve go a little bit of time left and I’m going to be happy through it,’ instead of being sad, grouchy or whatever. At times he got a little bit grouchy, but nothing like you would imagine.”

Tammy said for the most part Tim was happy, bubbly, joking and “people still loved to be around him.”

“He did get frustrated, because he couldn’t do things,” she said. “He couldn’t help with things. When he had to give up driving it wasn’t long after his diagnosis, because he couldn’t hit the brakes or gas very good when his leg was getting weak. It bothered him a lot, but you couldn’t see it but just a little bit. People other than me really didn’t see that at all.”

Tim and Tammy attended a support group once a week in Tulsa, Okla.

“There was a lot of people there and they were amazed at Tim’s attitude,” Tammy said. “They looked forward to him rolling his wheelchair in the door, because he would just lighten up the room and they needed that.  They would go around a circle and people would speak – a lot of them were really sad, but when Tim would speak it was not that way. He might tell the facts of something that had happened during the week which would be discouraging, but most of the time he would turn around with a joke and some smart alack funny thing and make people laugh. I think he knew it was his job and he needed to do that. It was required of him to be happy and bubbly, so he continued to do it, which might seem like kind of a chore, but it’s actually what kept him going. He was being forced to be that way. Everybody who knew about ALS knew it was a death sentence, but as far as how he was feeling mentally and physically – he hid that. If they didn’t see the wheelchair and breathing machine they would not know anything was wrong. He was just pretty happy.” 

Tammy takes great comfort knowing her husband made a difference – he was a rainbow in someone’s storm.

“His attitude helped other people so much,” she said, adding it also kept her going, “Supporting him to get out and go and be able to stay active instead of just sit at home saying getting him out was too much trouble…. I tried to help him do what he wanted to do whether I wanted to or not. I may have wanted to crawl in to bed and stay home. I supported what he wanted to do and I’m so glad I did, because so many people to this day still comment. People who went through ALS with their loved ones still comment about how helpful Tim was. Try to be cheerful. Try to be happy - that’s what he gave people. That ability comes with personality. Some people can’t do that. But, they could see that in Tim and see how much better it was. I think people who knew him saw him doing it and tried to be that way. Maybe they succeeded, maybe they didn’t, but he gave them a look at what it’s like to face something like this with dignity.” 

Tim passed away March 15, 2014, and Tammy says the loss has left other lessons behind.

“The biggest lesson I learned is you are not in control of anything,” she said. “We did not know from week to week how quickly he was going to lose functions – how long he was going to live. Before, I always wanted to know everything ahead of time. I wanted to know what’s going to happen, when it’s going to happen….. I had to let go of the feeling of being in control. There was no control on my part. That changed me, and now it’s still with me to this day. You don’t really have any say or control over a lot of things.”

Tammy has learned an appreciation for others.

“I never parked in handicapped spots myself, but it makes you appreciate how important those things are and how sad it is when people take advantage,” she said. “Handicapped stickers and parking – that’s just one of the things that has stuck with me is the respect they deserve. They need all of the help they can get in those areas. Another thing is I’m not as afraid of things as I used to be. Little things like taking trips alone and driving on long trips. I was always afraid to do them by myself. I’m not afraid anymore. After what I’ve been through – everything else seems minor.” 

Tammy offered this advice for others going through “devastating storms”.

“Don’t be afraid to get some help,” she said. “Don’t think you can do it all yourself. Try to enjoy your time. Don’t just sit back and wait for what’s going to happen to happen – try to enjoy each day. Everybody has resources and they should use them. The support groups were very helpful. I didn’t think they would be at first and didn’t want to go. I thought it would be very depressing, but I think they were very helpful. It is helpful to talk to other people who are going through the same thing or close to the same thing. Talk about those things with other people. Keep going." 

Tammy appreciates all who reached out to her and Tim, like her sister and brother-in-law.

“I had family in Bartlesville,” she said. “Kendall and Valerie (Hill) moved to help when he got his diagnosis. Ken was about to retire, so they moved there to help. My friend was there and having his daughter and son so close by was very helpful to both of us.”  

Tammy moved back to Hooker four years ago.

“He’s been gone eight years now,” she said. “I never did like Bartlesville, but that’s where his job was. After he died and things settled down, I realized I didn’t have to stay there. Hooker seemed right for me. I was raising Tammy Jo by myself. We still had family here: my dad, Tim’s mom and his sister, my other granddaughter, Sadie – it’s just where I ended up. Not where I expected to be at this point in my life - a single mother, widowed… It is what it is and I learned from Tim to make the best of everything. There can be good along with the bad.”

If you or a loved one had a "storm", but still managed to find the rainbow - we would like to tell your story. Contact Nancy Wallace-Kletecka, Managing Editor, Ulysses News, 620-356-1201.