by DJ Kimble
about the author:
DJ Kimble is 41 years old with Duchenne Muscular Dystrophy, a progressive muscle wasting disease. Thank you, DJ, for taking the time to share your valuable expertise and insights with us. To contact DJ, email him at dj_kimble99@yahoo.com
Duchenne’s Progression:
The Toll It Takes on the Mind
Continuing to find joy in life and maintaining your mental health with Duchenne can be very difficult at times.
A Kid
When I was still a kid, finding joy in life wasn’t really hard for me. I was blessed to have a great family and many cousins that I could play with. I was also lucky to have a lot of friends, as well as two best friends.
I grew up in a small rural town in West Virginia. a close knit town, where everyone knew each other and looked after everyone and did their best to include everyone, even me. I was always a very happy kid and Duchenne didn’t really play a part in my joy for life. Yes, there were plenty of times I felt down because I couldn’t do some of the things my family and friends did but I can’t say it affected my overall well being.
Getting Older
As I got older and started losing most of my abilities I still had an overall joy for life but continuing to find that joy did become harder because I struggled to do a lot of the things that brought that joy to me.
Duchenne is a brutal animal because your entire life is filled with one disappointment after another. You are able to begin life like every other person does but Duchenne begins to take away every one of your abilities one by one. When you are young it begins to take away your ability to run and play with the other kids. Then you lose your ability to walk and have to use a wheelchair.
As you get older you lose the ability to use your arms and you are unable to dress, bathe or even feed yourself. Then you lose your ability to use your hands and are unable to do your school work, draw or play video games. By the time you become an adult most of the abilities that you once had are now gone.
The Ultimate Loss
The ultimate loss of ability though, your ability to breathe is the one that hurts the most because you no longer have any independence, you must be looked after by someone at all times and your ability to get out and do the things that brings you joy diminishes greatly due to always having to have a power source. Also, the thought of having to rely on machines to keep you alive weighs heavily on a person because if that machine stops working our life most likely ends. I know this is heavy but that is our (my) reality.
Life expectancy also weighs heavily on those of us with Duchenne because you don’t know how to plan for your life. This was something that I struggled with a lot at times. I had dreams growing up of being either an architect or automotive designer but I didn’t think there was any reason for me to seriously consider these dreams of mine as reality because would I even still be around?
I also thought I should just spend my time enjoying life as much as possible in the present because how many tomorrow’s do I really have. Not knowing what tomorrow holds truly is an obstacle for those of us with Duchenne to overcome in life.
Continuous Reality of Loss
These ups and downs really make it harder and harder to continue finding joy in life and it does a number on your mental well-being. Most people see Duchenne as a physical disability but those of us living with this horrible disease have the most difficulty with the mental aspects of Duchenne. I have struggled a lot in life, especially as an adult trying to keep my thoughts about life from getting away from me and causing me to wonder if this life with Duchenne is still worth living.
The hardest part of living with Duchenne for me in this aspect is the continuous reality of loss in my life. When I speak about loss, I’m referring to my loss of abilities, my loss of doing the things I used to enjoy, my loss of hanging out with my friends, especially my best friends, my loss of spending time with my family and ultimately the loss of my independence. I try my absolute best to keep these thoughts at bay but unfortunately they do win at times, more than I would like to admit.
These thoughts have even actually made me consider if I still have the strength and fortitude to continue living this life or would it be better to just end things, I have even seriously thought about ways of doing so. To be fully honest, if I still had the ability to do so I probably would have during a few moments in my life when I was really struggling mentally.
Thankfully, I have been able to defeat my demons so far and I believe that having such a very supportive family has helped me the most in this battle of mine. I know many will think, “How could anyone ever think about ending their lives?” Well, all I can say to that is, live my life with Duchenne and let me know how it goes.
Two Things
There are two things that I contribute as a cause of most of my negative thoughts and mental anguish. These two causes I speak of are: keeping things bottled up and not sharing with others the things that are bothering me. The second thing is not having anything else to occupy my thoughts because I spend most of my time in my bedroom with nothing really to do, “An idle mind can be a dangerous mind”.
There are a few things over the last year or two that have really helped me overcome these two obstacles that hinder my mental well-being.
Those things are finally having friends with Duchenne that truly understand what living with Duchenne is like and I’m able to share things with them that I can’t really share with others. Being involved with a few Duchenne organizations as well, has also really helped me by allowing me to work with so many truly wonderful people but most importantly it has given me something worthwhile to do that benefits others as much as it does me.
The only advice that I can offer as a non-professional is to believe in yourself, find something that you truly enjoy in life and when you find yourself in a dark place. Please find someone you trust to talk with and share your struggles with them, don’t keep it bottled up inside, free yourself of that burden!!
(I also must say that nothing I said here today should be taken as medical advice, these are just my opinions!)
Taboo
I know that speaking like this can be seen as taboo in our society, but not speaking about such things leads to many of us who do struggle at times to not reach out to others for help to ease our minds.
Society is a major hurdle when it comes to a person’s mental well-being. People should not have to feel ashamed, embarrassed or like they are broken beyond repair when they struggle with things or even question life.
The health-care system is also in need of transformation when it comes to helpIng those that struggle with their mental well-being. Medicine is not the only answer to this issue, sometimes just being there to listen to people about what they are struggling with is all that a person needs. I know that medication is needed to help in a lot of cases, especially for those having a crisis situation but a lot of the time it’s also not necessary because it just masks the real issue and it can actually make things worse. A doctor’s oath above all is “To do no harm”.
I know that changing society’s feelings towards mental health won’t happen overnight but hopefully if enough of us continue this conversation and keep pushing for change in the health-care system then society’s feelings towards mental health will follow.
Just A Part of My Life with Duchenne
I am not ashamed of anything I said here today, it’s just a part of my life living with Duchenne. I have struggled many times in my life and I know I will struggle again in the future but I also know that I can overcome these struggles. It may feel like I’m in a hopeless situation but I will regain my joy for life once again.
I hope that writing this article today will help those that are struggling with finding joy and maintaining their mental health to know that it is ok and that things can get better no matter how low you feel in your life.
If you are struggling and find yourself in a crisis please get help immediately or call the National Suicide lifeline at 800-273-8255 or 988. You do not need to be suicidal to call, they are also there just to talk!
I would like to as always thank Family, Friends and Duchenne for continuing to allow me a place to share my journey with Duchenne.
– DJ
That was heartfelt and so helpful I’m sure for people with Duchenne but for caregivers like me it was very helpful! I can’t imagine how hard it is to stay positive but you are inspirational! Thank you for being so candid in sharing your thoughts and my prayers are with you. Just know DJ that you make a difference! ♥️ keep up the great work.
My brother and two uncles had Duchenne. I lost them at 21 and 25 years. My 2nd cousin lived to be 38 and got a college degree. It affects everyone in the family. I took tests to see if I was a carrier and it was 25% and my daughter took 2 amnio tests when she was pregnant. Her boy was fine but her daughter will likely be a carrier. My brother didn’t act like he was handicapped and he stayed positive. My parents took wonderful care of him and didn’t treat him as an invalid. It’s hard I know but you need God in your life to help you deal with your stress and your families. My brother has been gone 51 years and I still miss him so.
Thanks a lot for sharing your feelings. I have a 9 year old grandson, and he was diagnosed with Duchene Last year. At that time, I Just prayed and thought that God has a purpose with everything that happens to us, but my daughter, Mateo’s mom, got really angry and mad at God.
Fortunately at the moment, Mateo can walk and do everything by himself, although he has trouble climbing the stairs and walking.
I don’t want to think about the futur and I Just try to enjoy every day, but for my daughter, it isn’ t easy at all, and she is almost all the time angry.
She doesn’t want me to talk to her about God, but my faith is what lets me keep calm when things become difficult.
I forgot to say that my daughter and her 2 sons live with us, my husband and I.