There is an Enemy Within, Yet He Continues On…..

I have waited so long to write about this that the fire within has settled. I am prepared for the long haul, but also, not prepared at all. How do we prepare for the emotional, mental, and physical challenges that are to come? This is not a situation that we ever could have imagined. We have been slowly adjusting, but it is still surreal. My 52 year old husband, my intelligent, loving, funny, thoughtful husband, has Frontotemporal Dementia (FTD).

Looking back, symptoms may have been presenting as early as 2012. What we originally thought was depression, was probably the beginnings of this awful disease. By 2015, it had progressed into difficulty with word recall and minor memory issues. His doctor tested for every possible medical cause, and eventually sent him to a neurophysiologist. Three years ago this fall, that specialist told us that my 49 year old husband may have early onset dementia.

It was hard to believe that it was possible, but in the back of my mind, I knew it was true. He had been forgetting things I told him more than usual, and he had seemed a bit off for a while. The tests showed that he had a very high intelligence level, but his cognitive abilities were not matching up. By fall 2016, he had further testing at a memory clinic, and we were told that there was a high probability it was FTD. He is being treated accordingly, but there is no cure.

In the last three years we have been making as many memories as possible. We have traveled to Europe, Africa, and South America. One summer we took a minor league baseball road trip, in honor of his favorite movie, Bull Durham. We stopped and visited with many friends along the way. Friends we hadn’t seen in up to 25 years. We took a weekend trip to see one of his favorite football teams, the Kansas City Chiefs. We are living out our retirement dreams before we can’t anymore.

Two years ago, he went on disability from work. It was not in his plans. A disease he has no control over makes him feel like less of a man. He thinks he cannot take care of his family like he used to, but he has no idea how much he does. He goes to yoga most days, and I go with him 3 to 4 times a week. We were told it might help slow the progression of the disease. It has, and along the way it has also helped me to get in shape and strengthen, both mentally and physically. He grows a vegetable garden in the summer, and with his green thumb, we have an abundance of fruits and vegetables. He has taken up much of the family cooking and baking, making me look like a amateur after almost 30 years of marriage.

There are many ways to try to slow the disease. Memory games, puzzles, exercise, and small motor skill activities are a few. We will do anything to get as much time as we can, so he tries them all. He taught himself to knit last December, and by January he had made each of the kids a scarf. Intricate scarves with difficult stitches that look amazing! By March, he had finished a multiple panel afghan, and by May he had made me a varsity-style hooded sweater that looks like it was crafted by a professional. Last week he started knitting me socks. He has set the bar so high, I’m hesitant to even try to learn.

Unfortunately, he can’t do everything he used to. Over time, he loses the ability. We have seen these changes. They are happening slowly, but they are still happening. We might be able to slow the roll, but we cannot stop it. There is one thing we won’t let it do though, and that is bring us down without a fight.

FTD has brought us to a place we never thought we’d be. We have lost, and we have gained. It is a blessing and a curse, all at once. We are experiencing retirement in our fifties. We have been blessed to travel around the world. It is all temporary though. One day, and we have no idea when, we will be living a nightmare.

There is an enemy within him, and it is Frontotemporal Dementia.

What I learned from my Crohn’s Disease

As I have said before, I have Crohn’s Disease. It has been in remission for 12 years, but from a year after my diagnosis in 1998 to August 2002, it was like a wildfire reeking havoc on my body.

I spent three years, from the summer of 1999 after Brennan was born, until my major surgery in 2002, fighting for my life. I didn’t realize it at the time. It snuck up on me in little increments, and before I knew it it had overtaken my body. Specifically, my large intestine. I was on a severely restricted diet, and took handfuls of medication and vitamins. I was constantly in doctor’s offices, or emergency rooms. I had raging fevers, higher than you would think a person could survive. Higher than the kind that send parents into panics. I had a racing heart, even at rest, lost partial vision in my eyes, and fought a staph infection in my leg for a week in the hospital. I never had the stomach pains that many people with Crohn’s do, but I probably spent more time in the bathroom than the average person will spend in their lives. My weight went down to 88 pounds.

In the end of December 1999, after spending the holidays (which are crazy busy during NORMAL circumstances) at my grandmother’s and Bill’s grandfather’s viewings and funerals, I got what appeared to be the flu. It went on for a week or so, and didn’t seem to be getting better. As lay down for a nap one day, I said a prayer. I asked God to give me a sign. To let me know if I should go to the doctor after the New Year, or if it would go away on its own. When I woke up, I had little insect bite-like bumps all over my body. I will never forget that moment. We are a quietly religious family. I have always been a believer, but this was a pivotal moment in my life, my belief, and love of God. I spent the next two weeks in the hospital.

I remember, sometime in the second or third year of my Crohn’s, being exhausted. Tired of the constant battle. Laying on the bed, getting ready for another nap. I, again, said a prayer. I asked if I would be feeling better the next day, and begged that I would. Within a minute or two, and I kid you not, the phone rang a strange double ring. It reminded me of the way my phone at work rang when I was getting an interoffice call. When I picked it up, it was an operator recording. “I’m sorry, your request cannot be processed at this time. Please hang up and try again later.” I ran downstairs and asked Bill, who was sitting on the couch, if he had heard the phone ring. He said yes, but didn’t notice the weird ring. Another moment I will never forget. I am still quietly religious, but much more so. I believe. No one could ever tell me otherwise.

I fought having the surgery to remove my colon for a long time. I was too young to have an Ostomy bag. I was only in my early 30’s. How could I deal with that for my entire life?! I finally gave in to myself, it was my choice. I wanted to be there for my boys, and I was just too ill to be the mom I wanted to be. When the surgeon went in for my pre-op colonoscopy, he couldn’t even complete it due to the swelling. I had put the procedure off, and if it had been done sooner I’m sure they would have told me how dire the circumstances were. I’m glad I made the decision myself prior to that. I’m glad that I did it for the love of my family. In the end, it would turn out to be so much more than that.

That surgery saved my life. Literally. It was that bad. I can now eat anything I want, I take no medication for Crohn’s, and am back to a more-than-healthy weight. And I am LIVING. Living a life I wouldn’t be, if not for said surgery. I am living a life I would not be, if not for Crohn’s Disease.

I have learned to appreciate the little things that so many take for granted. The blue sky, white clouds, green trees. The contrast between them, and the beauty of it. The breeze. The birds. The smell of fresh air.

I have learned not to take my family and friends for granted, and to catch myself when I think that I am. To take care of them, as they took care of me. To love them with everything I have. To look to them for strength when I need it, and to give strength and support to them when they do.

I have traveled farther out of my comfort zone than I ever thought I would. If not for Crohn’s we would not have traveled abroad, adopted our daughter, or lived in China. Before Crohn’s my life was ruled by fear of the unknown. After Crohn’s, by the spirit of adventure, and a love of life.

I have walked on the Great Wall of China, and stood before the first emperor’s Terracotta Warriors. I have trekked through the rainforest in Langkawi, Malaysia, and floated through the mangroves. I have basked in the hope of longevity from the waterfall of the Pure Water Temple in Kyoto, Japan, and walked the Nightingale floors of Nijo’s Castle. I have explored the streets of Ho Chi Minh City, and traveled through the Mekong Delta. I have walked the beautiful beaches of Vietnam. I have zip-lined through the trees in Thailand, and fed an elephant bananas. Right into that giant mouth. I have been to the Demilitarized Zone in South Korea, and I have stood in North Korea, in the MAC (Military Armistice Commission) building.

Through my Crohn’s Disease I learned how to live. How to love. How to learn. But I’m not done. I have so much more to see, so much more to experience, so much more to love, thanks to my Crohn’s Disease.