Today’s article is a guest post from Terry Waite, the co-founder of the Kennedy’s Disease Association. He wrote the article for the KDA’s fall newsletter, but I felt it needed a greater distribution because of its message.
Many of us with Kennedy’s Disease (aka Spinal Bulbar Muscular Atrophy) occasionally become a little down. These feeling can lead to frustration and even depression if we are not careful.
We often feel isolated. And, we occasionally wear the mantle of guilt (not wanting to be an anchor to our loved ones). Getting beyond those feelings is difficult. And, there are times when no matter how hard we try, we just can’t break out of this negative thought cycle.
Terry’s story is a powerful message and a reminder to all of us that occasionally we need to reach out for help.
Just do it!
Many of us with Kennedy’s Disease will suffer with depression and anxiety at some point as the disease progresses. I had always told myself that I could handle any feelings in my head that come along without help; I was wrong and almost DEAD wrong.
Over the past 6 months, I started on a downhill slide in my progression that seemed to have no end. About 5 months ago something very strange started happening to me. Most mornings, just as I awoke, I would be overtaken by anxiety and a deep emotional overflow that would have me in tears and I could not control it.
Along with this was the feeling that I wish I had died in my sleep. This would happen most mornings and seemed to get somewhat better as the day went on. However, at anytime during the day no matter where I was I would sometimes just breakdown into tears. I did some research online and found some interesting information.
One of the worst times for those with anxiety and/or depression is waking up in the mornings. When you come out of your sleep that is when your problems start. In the morning all the things that you have been suppressing come to the top of your awareness.
Morning anxiety is caused by debating with yourself …
- Can I handle this?
- How am I going to get things done?
- Is this ever going to change?
- How many more days like this before something changes for the better?
I found out that in the morning you get back in touch with your subconscious mind upon awakening.
Some people with anxiety oversleep to avoid life because it is horrible. At some stage when you are asleep you become detached from all your problems and your soul merges with pure consciousness and deep silence. You take a deep rest and feel at peace. At that stage, your problems have disappeared completely. When you are asleep, you have no problems. As you are waking up, you are aware that you are coming out of peace and your worries or concerns return.
This had gotten to the point that I was avoiding going places and even trying to do things because I had already set myself up for failure before I even started. My wife Susanne suggested that I should speak with my doctor and perhaps try a medication to help uplift my mood for a while because I was no longer able to control these thoughts.
I drove to the doctor's office and spoke with him for about an hour and a half about what was going on and he suggested I try Cymbalta to see if would help. I went home and took my first dose and the next day I started to feel improvement. Each day forward, I felt better. Within 3-4 days, I was waking up without the anxiety and depressive attacks. It also changed my outlook on trying to get out and do things and quit being ruled by the “what ifs” and the “I can't's”.
I had a 50
th Birthday coming up and Susanne had been trying for the past few months to get me to pick something special to do. I looked up tandem hang gliding on the Internet because I had always wanted to do that, but I found that all of them had a requirement that I be able to run 20 steps at a fast pace. That shot down that idea but I was determined to keep looking. A friend suggested that I do a Tandem Skydive. I had always said I would like to do it, but I started to get those “what ifs” and I can't's” again but this time my mind was more balanced and I was ready for it, and I said, “YES! I will do it!” I pushed those bad thoughts aside and was not going to let them ruin my life.
A couple other friends decided to join in – the three of us were going to sky dive, while Susanne, her mother and another friend were our ‘ground crew - pit party’. We caravanned 3 hours to the Lodi Parachute Center in Central California.
The jump facility was fantastic! I explained to them about Kennedy’s Disease and they thought that it was great that I came out to do this. They assigned extra help to assist me getting up into the plane (5 guys lifted me up), ordered a larger chute for a slower/softer landing and then my tandem instructor hooked me up to his rigging while en route to our jump spot. My instructor told me that the week prior, he had a man with no legs jump with him and he had a great time as well.
I was perfectly calm (more than the other first time jumpers). People said afterwards that they could see it in my face even seconds before the jump and I was to be the first one out of the plane. It was awesome and the landing was perfect even with my bad legs. My tandem professional jumper held my legs up and used his to plant the soft landing.
I am sharing a very personal story of mine because I know that many of you that will read this can relate. Some of you may be a little too close and if this story helps just one of you, I will be happy. If you feel the way I felt, see your doctor about the possibility of some extra help (even if just temporary) with perhaps some medication.
My next adventure is to find a place where I
can do a tandem hang glide where there is enough updraft that I do not need to run to launch. I know they are out there because I have seen videos of it.
Therefore, for those of you who have stopped enjoying life because you are stopping your dreams before you even give them a try …
JUST DO IT
... or at least try. We can still do many things!
Having someone to share your feelings with is an important part of the healing and acceptance process. I use the term ‘healing’ because the news often scars us mentally and emotionally. Before we can accept our situation, we must first heal our emotional wounds. The healing process is not easy and is often a painful experience. It is even more difficult when there is no one to share your thoughts and concerns with. 
Then seek out a good friend or family member that you trust. You’ll know who that is. 
