by DJ Kimble
about the author:
DJ Kimble is 43 years old with Duchenne. He has shared many life experiences with us, all of which have been poignant. DJ has significant experience with the isolation component of Duchenne. He lost his ability to speak after undergoing a tracheostomy as a teen. After 15 long years, DJ was finally able to communicate with the outside world again with eye gaze technology.
Holidays with Duchenne
The holidays are a very special time of the year, especially for those of us with Duchenne. We enjoy being with our families and joining in with the festivities just as much as everyone else does.
But, as we get older and Duchenne continues to progress, it becomes harder and harder for us to stay involved as much as we would like. It’s much more difficult to feel like we still belong and that we are still able to take part in the festivities and traditions unique to our own family.
As we lose our abilities and experience this loss, it does become very hard for us. The exclusion truly does hurt and can become very overwhelming at times. We see all the joy that everyone else is having and we just want to experience that same joy with our families, like we once did.
Holidays as a Child
I have always looked forward to the holidays because it was the time of year that I was able to be with my family. From an early age, I knew just how important my family was to me. I knew they would play a big role in my life to help me find my way and to have the ability to thrive in life – despite Duchenne and what it held in store for me.
As I was growing up and was still able to walk, the holidays felt pretty normal to me because I could still do everything that the rest of my family did. I could participate in all the festivities of all the holidays, from going trick or treating for Halloween, to helping make cookies and decorate for Christmas, to enjoying egg hunts for Easter. I never really felt like I was left out in any way for the most part.
The only holiday that Duchenne really played a role in when I could still walk was Easter, mainly because my yearly clinic visits always fell during this time. I’m sure everyone reading this knows that clinic days are some of the hardest and most stressful days for all of us, mostly due to the unknowns that Duchenne hides. It was no different for us.
The one saving grace that we had at this time was that we would travel to my grandparent’s home for the week to spend Easter with them and to make it easier to get to my appointments early in the morning. I really believe that this was a blessing for my mom to be with family and have that support during this time early on. I think it allowed her to find her way on this Duchenne journey that we were just beginning. Without this support in place, I’m not sure we would have truly found our way.
Holidays As A Teen
As I got older and lost my ability to walk, the holidays did start to become a bit harder to enjoy, and I did begin to miss out on things that my family did.
I could no longer participate in many of the festivities that I had so enjoyed, I couldn’t go trick or treating for Halloween. I wasn’t able to really help with making cookies and decorate for Christmas. I wasn’t able to have Easter egg hunts anymore.
It was hard missing out on all these festivities. In the moment, it was a terrible feeling, and I would get quite upset at times. Thankfully, with the help of my mom, we did find new things for me to do instead and those substitutions definitely helped make it a bit easier for me.
It also became much harder for me to visit the homes of family members because most homes just aren’t wheelchair accessible. The homes that I could get into – besides just a few- just weren’t accepting of me in their homes. They weren’t accepting for many reasons, but mostly because I might leave wheelchair tracks on their floors or they have to move things around in order for me to get in. I don’t believe they were purposely angry, but it still didn’t make me feel any better.
These instances did bother me when I would visit but what truly hurt the most was when certain family members would get together and start teasing me about being overweight. Perhaps it was ignorance, but they couldn’t seem to understand how hard it is for someone in a wheelchair – with no physical activity – to maintain a healthy weight. It was either ignorance or they just didn’t care. I tend to believe the latter.
It was a very hard thing for me because I just couldn’t understand how those people who say “we love you” could say such terrible things in front of everyone. It just wasn’t right to do that to anyone, let alone someone who didn’t really have any control over any of it.
I don’t necessarily think about those moments often but I have never forgotten them either.
Holidays as an Adult
Holidays as an adult are something that I still look forward to for the same reasons that I did growing up. It’s really the only time when my family is all together.
I really do look forward to being with my family during the holidays, but it has definitely become much harder to capture that holiday joy that I once knew. It’s not as easy for me to travel as it used to be. I’m not able to get out of the house and do things with the family – mainly because of the cold.
But the biggest hindrance is that I’m really not able to talk with my family anymore like I wish I could. I lost the ability to talk years ago when I got my trach. Even though I use eye gaze technology to communicate now, it’s still not the same and we don’t hang out anymore like I wish we did.
I usually just find myself sitting in my room while everyone is sitting together in the next room, enjoying themselves, talking and laughing about everything happening in their lives, and reminiscing about all the great times that we have all experienced in life together.
Wishing
And as I listen, I find myself wishing that I could still experience that wonderful joy that means absolutely everything to me in this world. While I’m wishing, I’m also trying to understand why I can’t feel it anymore. I can’t but help to feel quite sad and upset as I’m wondering if I will ever experience that joy with them again.
I know that my family would never want me to feel that way and I absolutely don’t blame anyone for it in any way. That is probably why I have never really shared these feelings with my family. I wouldn’t want them to know and then feel responsible.
Still being with them is truly enough for me, but I do long to be in those moments again when we easily connected. Those times are very special to me.
I really wish that these moments would return for me one day. In fact, I truly believe that they will.