Wednesday, September 21, 2011

Our Crazy Lives!

Lately, I've been feeling a lot of stress and it comes out in various ways; some of them are inappropriate, causing people to worry about us and that's the last thing I want. I thought I would share our story so people can understand why I sometimes make a dramatic comment about my life. My high school friends will remember my sarcastic style of humor and my flair for the dramatic. I also feel things very deeply and I have a lot of empathy for people.

Bruce has ataxia. It's a neurological symptom of something, and in some cases, it doesn't matter what the cause is because there is no cure. It causes the cerebellum to shrink over time. We are fine and we are handling this with the help of friends and family. This whole thing is a process and a learning experience like no other I've ever experienced. We have incredible emotional support and I am very grateful. Sometimes I'm in awe of all of the love we receive from our friends and family. Bruce and I have always been really close. It's the old story - we were great friends before we fell in love. When we met we were both leaving abusive relationships and we helped each other regain our love of life. It was a wonderful time in both of our lives. We will celebrate our 25th anniversary next month.

The ataxia started about four years ago with subtle signs. The hardest thing for Bruce since the beginning is that he is dizzy all the time. We've been to neurologists, various specialists, ENT doctors and chiropractors. We've tried experimental medications, acupuncture and on and on. Many of these things do help a little especially things like acupuncture and other Eastern medical concepts. This is a progressive disease and now Bruce has difficulty speaking, walking and of course, there's the ever present vertigo. He's also very tired most of the time. Recently, we've seen and read a lot about Lyme disease and how, if untreated, it can look just like what Bruce has. However, it's really hard to get a doctor to even test for it. I'm currently trying to get an infectious disease doctor in Hermosillo to take this on and I think he's going to do it. Throughout this whole ordeal Bruce is still working as a designer. His mind is still sharp and he is still the fabulous man he has always been. He still comforts me when I'm at the end of my rope. That was happening a lot at the beginning of the summer, but I'm feeling a lot stronger now. Somehow I feel like I turned a corner in the last couple of weeks. I have to give credit to my friends who are always there for me, not matter what! It's amazing and I love every one of them very much. I've learned to ask for what I need; something I never did in the past.

Tomorrow I'm going to Tucson to pick up a wheelchair we ordered from Ebay, my favorite place to buy things. Medical supply store price $950.00; Ebay $150.00 - brand new, guaranteed. As a side note, the drug companies and the medical supply people should be tarred and feathered for ripping off people, especially people who need these things. Ok enough of that rant. Bruce does fine with his walker, but he loses his balance and I just feel a whole lot better knowing that he won't fall getting from point A to point B. I know that every time he has to make a little adjustment, like walker to wheelchair, it feels to him like he's giving in to the disease. I know how hard it is for him to have to do that. The wheelchair makes things a whole lot easier and reduces the stress level for both of us. He spends a lot of time and effort trying NOT to fall. I find that one of the keys to dealing successfully with this disease is to make everything as easy and simple as possible. Stress is another killer with this disease and it makes all of the symptoms worse. You can imagine the stress from building a new house. Naturally, people ask us why we decided to go ahead with it - it's simple - it was our dream home and it still is....we couldn't just stop in the middle. We do have an elevator which is a lifesaver and it makes everything accessible for Bruce. We also have a pool which is great for keeping the muscles alive and it's just plain fun. We've learned that while so many people understand and are so supportive, others give advice that doesn't help. In fact some of it hurts. I used to feel that people were being critical of me and thinking I should be doing more for Bruce or doing things a different way. Now I realize they are just trying to help and they are frustrated that nothing has worked 100 percent. Because I was already upset and frustrated, everything seemed bigger and more important than it really was. I have learned so much through this process. I've learned not to judge other people - ever - no matter what. You just can't do that unless you have literally have walked in their shoes. That old saying is so true. I've also learned that gossip really is mean spirited. There's never a reason to gossip yet some people thrive on it. Again, it comes from insecurity.

We are still hoping for improvement and at least a partial recovery. I feel very hopeful in a lot of ways. Bruce is not dying and he is not in any pain. He's very much alive and he's physically healthy in every other way. He's still smart, sweet and compassionate. We are really lucky have each other and the disease is not just Bruce's; it's mine too. It's been very hard for him to learn to cope with people who feel uncomfortable around him. He's learned not to take it personally. He's learned to accept that some people are so uncomfortable with illness that they avoid him. His only sister and her husband haven't contacted him in over two years. While it's very sad and heartbreaking for Bruce, we weren't completely surprised. They live in a very superficial world and illness is not part of their world. I have been furious with them, but Bruce has accepted it. Now, after a lot of therapy, I accept it too. The rest of our family has been incredibly supportive. We also have a group of wonderful friends here in San Carlos. We've been practicing Reiki for quite a while and have an incredible Reiki mentor. From this experience, I've stumbled on to a really positive spiritual path. I wholeheartedly believe in angels too. Some people think I'm nuts, but it really works for me and for Bruce. In many ways, Bruce's illness has forced us to take a better path in life and for that I am grateful. For years, I was struggling with my traditional Episcopalian upbringing and trying desperately to believe in all that I was taught as a child. I realize now - there's nothing wrong with the church, it was all me. I wasn't ready to believe in anything. I had to do a lot of soul searching and find a positive way to deal with this illness. I started really thinking about our marriage vows and what they mean to me. I feel like they are sacred. Dealing with an illness is very hard work, not only for the one who has the illness, but their partner. In many ways, I'm grateful that I've had the chance to show Bruce how much I really love him. I know that I will do anything to make his life easier. I will never give up hope. I will always believe in him and I won't take "no" for an answer from the medical profession. At our most recent visit to our neurologist in Hermosillo, Mexico, the doctor gave us bad news about the function of Bruce's brain stem. Then he told us to try a homeopathic powder that he uses himself. I bought some yesterday and we're giving it a try. I found it comforting and painfully honest that a neurologist that deals with life and death situations every day still has confidence in, and believes in alternative medicines. I have a lot of respect for naturopathic medicines and treatments. I love Eastern medicine and the concept that the body can cure itself.

As you can see, we both feel very positive about our lives and we're really grateful that we live in this beautiful area. It makes dealing with the not so great days a little less painful. I have to mention our dogs, Teddy and Zoey and our beloved and weird cat, Niko. They give us so much joy and they are a constant souce of comfort to both of us. To all of my beautiful friends and family, and to Bruce, thank you for being part of my life.


  1. Love ya both..very eloquently put Jan..from the fear to the the hope and faith!! I wish there was something I could do to help you. Just know i will have the both of you in my daily prayer's!!! loves Earlina

  2. Jan!! Please, please, please let me know if you ever need any help. I MEAN IT! As much as I hate to fly, I'd get my big white on that plane and come help you and Bruce in any way. Your sense of humor must certainly help Bruce along. I just know he'll kick this disease's is just who he is. Oh yes, I do believe in Angels and isn't it amazing when times get tough we turn to faith. Miss you guys! Love (NL) Lynn & Bob

  3. Jan - Thanks for sharing this. I can't imagine how difficult this has to be for you both. While we have never met, I enjoy being your fb friend. I feel that you and Bruce are new, old friends. For me? I would like to say that I believe we are on this planet to learn and love. It seems that you and Bruce are realizing and learning so much about yourselves, and while these life difficulties/challenges are so hard to deal with, it seems that you have such a great handle on it. I'm grateful that you wrote about this because I have learned that if something like this happens in my life, I can be inspired by your story. You are both warriors, and it's an honor to know you. b'shalom my friend. Oh..... I'm still waiting for the invite to play a piano concert at your new home... hee-hee. Hugs and stuff. - Ken

  4. Hi Jan - Yes, we learn a great deal from our misfortunes. I feel sad for those who have been unfortunate enough to sail through life with little adversity.

    Difficulties truly are challenges for those smart enough to grab the lessons to be learned. Seems like you and Bruce are very wise people.

    Keep writing. It's cathartic. Keep the faith. Keep going. May peace alway be with you.