Truly listening…

First of all let me say thank you Siri for all you do for me. I have figured out how to access podcasts using my Bluetooth and today I got to listen to one of my favorites, This American Life. I recommend this weeks episode "Something Only I Can See." This story is a shining example of why really listening to someone is important. To be a good listener, one must set their own selves aside and hear another's experience. I love this story because I can relate so well. I can relate to having medical professionals tell me what I am experiencing or tell me what my reality is, without ever acknowledging that I may know myself. How wonderful to have someone listen to you, no matter how "crazy" you may sound. And guess what? Your experience may actually be true and more enlightened than even the most current scientific thinking. All of that being said, listen to this episode and tell me what you think.

This also leads me to recommend to you a new book by Clyde Dee, "Fighting for Freedom in America: Memoir of a "Schizophrenia" and Mainstream Cultural Delusions." It is an e-book and can be read on the Kindle. The author is a colleague and friend. In this book, Clyde shares his experiences with so-called schizophrenia in the most honest way. If you or someone you have known struggles with mental health and/or other experiences that are not easily explained, you may be able to appreciate this book. Just taking the time to really listen deeply to what another human has experienced is worthwhile. Not to mention, Clyde writes beautifully and courageously honest. I am very impressed with his work and I am honored to know him as a human being.

Last but not least, today I received a response from an inquiry I sent about a job in academia. Just think good thoughts for me as it would do me a great deal of good to have some work. Until next time…

By the way, if you want to respond to any post just send me an email at dr.Brendakay@Gmail.com. Please let me know if you're responses for my eyes only or if I may post it on my blog. I really love to hear from you.

Dream, dream, dream, dream…

You know the song, hopefully. Last night I had a dream  showing off that I could walk. They say that attitude is everything. And, you, of course, have up days and down days. So how do you know whether you have a good attitude? Well, I believe that you must be having a good attitude if you are dreaming of a healing.

I have been doing well. In fact, I have more feeling in my arms these days. I am praying for my hands to heal because that would make life so much easier.

I am still having problems. I am still having problems getting an appointment at UCSF. I am still having problems with my primary care physician. But overall, things are good.

Getting out in the world…

We made a trip to Walnut Creek to look at some possible housing options. May as well stop at Sam's Club to have a hot dog while we are nearby. As we are waiting in line, a woman approaches us and she seems excited. She asked us if we would mind talking with her as she has a sister who had recently become quadriplegic. She was excited to see us out in the world. She was curious about how we had gotten out and why we seemed so happy. We were glad to speak with her. She told us that it would be great if we could meet and/or talk with her sister. Perhaps it might create some hope for the future. We did call and spoke with the sister as well as the mom. It was such a blessing for us to get out of ourselves and remember that things have improved so much during the year. We hope to make a visit real soon and to keep in mind how much things have changed in the last year and a half. A friend called me recently and reminded me that when you let someone help you, you are actually giving them something. This was absolutely the case when this woman approached us. She gave us a very powerful gift by helping us to remember that we are not alone and that we are all connected.

I will remember to reach out to others and to accept the blessings that have been given to me so abundantly.

My gratitude…

Happy Thanksgiving to you and yours…

My heart is overflowing with love and gratitude today and I will strive to be mindful of the many and beautiful blessings that I am surrounded by.

• First of all, I am grateful to God
• my partner, Colleen, who has taught me how to love, I am so very grateful…
• Everyone around me, the team, that helps me to be alive every day
• to all my beautiful family, that amaze me with their love and support
• to the many who have taught me so much, along the way
• for my van
• for the feast and the friends we shared today with
• for the housing and my colleagues who have helped me
• for the friends who cannot bring themselves to see me, yet
• Santa Clara Valley Medical Center 
• for music
• for the Department of Rehabilitation
• for JFKU
• for. Ms. Wheelchair USA
• for the earth, the universe
• for ladybugs
• for the ocean
• for my memories
• for the future
• Punkin

Your heart was made to love and be grateful…

2015

Standing Up

I used to teach at Diablo Valley College. When I was injured and in the hospital, it did not occur to me that I had upcoming class until a few days before the class was scheduled to begin. I finally "woke up" and realized that I needed to call my supervisor and let her know what had happened. I assured her that I would be able to return to work the next summer. About six months before my class was to begin, I contacted my supervisor to set up a meeting to discuss what accommodations I might need. She told me, "we gave your class away." I was totally devastated because I love teaching, I am a good teacher, and this was a link to my future that gave me some will to keep fighting. Since then, I have learned some about the Americans with Disabilities Act. I found that I qualified to file a charge with the Equal Employment Opportunities Commission. I chose to do this because it really hurt me to lose that position and I wanted to know whether my feelings of being wronged were valid. I have volunteered to attend mediation regarding this issue and I'm waiting to hear if the college is willing to attend mediation. I contacted the Employment Law Center in San Francisco and was referred to a disability employment workshop in Berkeley where I would be able to meet with a lawyer to discuss the case. The Employment Law Center were very supportive of me and the issue that I have raised. It is my hope that I will be able to get the job back because I can do it with a reasonable accommodation. I will keep you all posted and in the loop. I know that I am not the only one that has experienced this sort of thing. I encourage everyone to stand up for themselves as the worst thing that can happen is that I will learn more about my rights. It may just be possible, that the employer will also learn how to be more culturally competent. Last but not least, I hope to be a good role model for students with a disability. I want to send a message that you can achieve your dreams and do what you want with or without a disability. So, I will keep you in the loop about what goes on and what I learn. Send good energy and good juju. Thank you for all the love and support.

Review

I've been thinking today and looking over all the progress we've made in the last year. In the hospital. I think we were just in shock and sort of in a fantasy land. I guess this is probably a defense mechanism protecting us from dealing with the reality of our situation. I was unconscious for 10 days. The next 20 days were spent fighting off the demons that morphine brings. The second 30 days we were moved to Santa Clara Valley Medical Center, which was like spinal cord injury heaven. Things were so easy when we were there, the staff was so positive, and I believe it was by design that stress was kept to a minimum so that we could learn what we needed to learn. The days were packed with learning how to care for me and how to direct my care. We were definitely on a pink cloud when we discharged. Chaos reigned as soon as we got home. We had medications and supplies strewn all over our house. People were coming and going and offering to help, but we were either too proud or too in denial to accept. My partner tried to do everything which lasted about three weeks. Then it all fell apart. The next six months were quite hectic. Colleen moved out and I grabbed on to anyone that I thought could help me. I had never felt so vulnerable in all my life. I pretty much let people run rampant through the house because I felt powerless. Colleen was so angry with me and so hurt. I didn't believe that we could make it with my disability. Things were really awful. I cried just about every day. At some point I was able to take her perspective and understand how things had gotten so out of hand. Thankfully I was able to get Colleen to come back. Slowly but surely we got our house back to somewhat what it used to be like and we had to change caregivers. We changed a lot of things. Now it is almost like it used to be pre-injury. When I look back at all the changes we went through I realize that it was par for the course. We didn't know how to cope with the change in our lives. We could hardly look at one another because it was so painful. Questions of "what if?" and "why me?" plagued us. To be honest, they still do, but today, looking back, I am proud of how strong we've been and the progress we've made. I will have to keep this in perspective as I face the future because it will certainly be even more manageable as time goes by. I guess this is a universal truth when dealing with struggles. Somehow we get through it. Over time things get better.

Looking Towards Autumn

One thing you might not know about quadriplegics is that they lose their ability to automatically regulate heat and cold. Most people shiver when they're called or sweat when they're hot which helps them to regulate their body temperature. When I sweat it usually means that there is something wrong. I have to watch out for a thing called autonomic dysreflexia. My body has a backup system (all bodies. I suppose) that allows me to know when something is bothering my body, a.k.a. noxious stimulus. What this means is that if I have an ingrown toenail that is bothering me. I don't feel it, but sooner or later if it bothers me enough my blood pressure will start to go up and I may begin to sweat. This is my warning signal and once I am aware I need to take action. I will begin by taking my blood pressure every two minutes to see if it's rising. Then I have to find the noxious stimulus or the source of my pain. If I cannot find it, and my blood pressure continues to rise. I may need to call 911 or risk a possible stroke. So we have a checklist to review about possible causes of autonomic dysreflexia. We also have a handout to hand to the EMT technicians and/or emergency room physicians so that they know what action to take. I have to be able to help them understand because my experience shows me that they're not usually looking to read anything in these moments. So, we ran through the checklist and usually we find the source or the noxious stimuli. I have to be very careful about being in the heat or cold because it can trigger autonomic dysreflexia. All this to say it is too hot for me today and I look forward to autumn.