by John Buchbach
about the author:
John Buchbach is 45 years old Duchenne Muscular Dystrophy. Despite DMD, he has kept busy over the years with attending business school, working, owning his own business. Nowadays, both John and his wife stay busy – raising their young son together.
Life Goes On: My Story and My Journey Continue
– read part 1 of John’s story here –
In late 2016 I went to a trade show with some new co-workers and I was introduced to a physical therapist that everyone had been talking about.
She was an established doctor of physical therapy in Virginia that was working with patients through a local clinic and was working with several of my coworkers. As soon as I met her I knew I had to get to know her. She was so beautiful and laid back.
We had several good conversations that day and before we left I asked for her number. I wanted to play it cool because I had been in several previous relationships over the years and had learned that coming off desperate, insecure, or even too eager can push some women away. I called her a couple days later and asked if she would like to get together and have dinner.
She agreed and we had our first date at a local restaurant in a mall that I knew would have automatic doors and ample space so my wheelchair would not be an obstacle. We had a great first date with conversation spanning from personal likes (music, movies, etc) to our career history and what we do in our particular fields.
Now I am not embarrassed about my disability but I typically wait to bring details up until someone asks, or it is completely obvious that they are very curious and won’t ask for fear of coming off offensive. She did inquire about my diagnoses but didn’t really have much experience with DMD and had no idea really that I was more limited than I was or portrayed.
At the end of our date I walked/ rolled her to her car and she attempted to give me a hug goodbye without understanding why I didn’t hug her back. She at first thought maybe I was uninterested, or that it was just an awkward move that ended wrong.
We later spoke and she had done some online research on DMD and realized my physical abilities didn’t allow me to just lift my arms and reciprocate the initiated previous hug. This helped to actually lead us into more detailed conversations as we continued to date and helped her to better understand my specific abilities and inabilities.
I have had numerous previous relationships and some women are able to overlook my DMD and some are not, but this is nothing that I have ever taken personal or felt wasn’t understandable because honestly DMD is a difficult disability and does change a relationship’s dynamics whether we want to accept that or not. Some people, and in my case, women, need more physical touch and can’t look past or feel it can be adapted to make a relationship work and I understand that.
Living Together
My girlfriend at the time (and now wife) and I continued dating and eventually became committed to one another resulting in living together. Living with someone else is a must in any serious relationship because you can’t hide the truth and each starts to show and share their vulnerabilities. This was a huge step forward for us because now we had nothing hidden from one another when it came to our physical abilities and allowed our physical intimacy to build and adapt to meet each other needs and wants.
A lot of DMD adults joke around or get offended when people ask “can you have sex” but it’s a serious question that eventually has to be addressed because intimacy with an able bodied person and a person with DMD is different and takes time to build and learn or the reality is the relationship will fall apart. Intimacy is a big part of any relationship and whether we want to accept it or not it is different and at times difficult with physical limitations.
I also feel that your girlfriend or spouse cannot be a caregiver. Don’t get me wrong, my wife helps me daily with things but she is not forced or required to help me. I have personal care aides that help me with my morning needs and an evening aide for my evening routine. This takes the added burden of being a full time caregiver away from the person who really wants to be your loving girlfriend or wife and have the feelings of intimacy and security without the burden and requirements of all that of a personal care aide.
Ventilator
In late 2018 I had been working with this corporation that purchased my business for over two years and I started to notice I was suffering with serious fatigue, I was losing my memory of basic things and my focus was becoming very poor.
In August 2018 I had just finished a work week and while I was home with my girlfriend she noticed I was talking off the wall and not making sense. I had even started to hallucinate so she took me to the ER for further evaluation.
During my ER visit I had already blacked out and had no memory of things that were transpiring until I woke up two days later admitted to the local ICU fully intubated and unable to move. While intubated I could hear everything and everyone around me but couldn’t respond or move. My first thought was “I’m going to die”.
The medical staff and my family members had started talking about end of life and that my quality of life would never be the same. I was diagnosed with severe hypercapnia and my only options were becoming fully ventilator dependent or passing away. At this point I’m only hearing everyone’s discussions. My mother had pretty much gone with the doctors’ recommendation and, unless I could say otherwise, I was going to be removed from life support and allowed to drift off.
My girlfriend at the time was unable to say anything on my behalf because she had no legal right but she knew me better than most people at this time. She worked effortlessly to communicate with me with eye movements and she knew, just like I did, that I was not ready to give up. The day before the medical staff was going to remove me from life support, my girlfriend helped me finally communicate that I wanted a tracheotomy and I wanted to live.
When I look back on this time, I still become emotional because I was very grateful that GOD helped this angel intervene. I received a trach that next day and my first real memories were that, unlike most patients I was able to talk immediately, I was able to finally be comfortable again without the tube in my throat and the sweet sound of that new ventilator was reassurance that I was going to continue on.
Some of the first things I said to my girlfriend were that I wanted to go home asap, I wanted to take her on a cruise vacation, and I wanted her to move to Florida with me so we could be in warmer climates. I had no intentions of giving up and my goal was to take each day as a gift from GOD and live it the best I could.
My Wife and Son
After transitioning home and learning to care for and use my ventilator, we worked on relocating to Florida to a home I had purchased years prior. We moved down in October 2018 got engaged and started our new lives together with a new outlook on life and nothing pre planned.
After a battle with pneumonia and other complications vent related, my fiancé whispered to me right before a scary medical procedure that I had to continue to be strong. I had to be strong for her and for our new baby.
I was so scared and nervous but this news helped me to get through because, as GOD knew, nothing would have made me happier and more fulfilled in life than to be a daddy and husband.
September 19th of 2020 my son John “Johnnie” Jacob Buchbach Jr. was born and on October 31st 2020 my best friend, angel and long term girlfriend became my wife. My son would never have to worry about my struggles because DMD isn’t passed onto boy’s through the father.
We have taken several promised and blessed cruise vacations and visit Disney World on a regular basis. I have been further blessed with the knowledge of knowing how to adapt my equipment so I can be a very involved daddy.
I feed him, hold him for daily naps, take him for walks/ rolls to relax him and we have an amazing connection that makes my heart happy in ways that I can’t explain.
Don’t Be Afraid
I would end this glimpse into my life with advice not to be discouraged by struggles we face daily.
- Don’t think that just because you have DMD or are a parent of a child with DMD that it’s the end of the world and that you don’t have options of having a “normal” and fulfilling life.
- Don’t let your disability define you and become your only focus.
- Don’t be afraid of life on a ventilator, or using medical equipment to make your life easier, and most importantly don’t be afraid to put yourself out there or you might miss an experience or relationship that is right in front of you.
There are always different situations and people that have it worse than you, so self loathing isn’t worth your energy.
God has a plan for all of us, so listen and let him show you your journey and reason for living. It’s not bad luck or hate that has given us these challenges. We are given our disabilities for a reason and we will do things, touch people, and possibly help people in ways we never would have if we didn’t have the gift of DMD.
God Speed…
– John and Family
Awesome, John, truly inspirational!!
Thank you DJ, I’m glad you are a fellow DMD brother and found something that touched you with my personal trials. I wish you strength, happiness, and good health always. GOD Speed~ John
Thank you for writing this and reminding me to keep my hope alive. I have 2 sons with Duchenne and some days I lose focus, and depression takes over. God does have a divine plan for thier lives. Thank you for reminding me. God bless.
Hello Christi- I know that our diagnosis can be hard on our parents. All the unknowns, the guilt, finger pointing, etc. it’s easy for me to say this but it’s the truth, put all that away because it’s not going to help you or your two boys. Plus you don’t want then to focus on why is mom sad, and why am I disabled? DMD is a struggle but in some ways you’ll find joy in it. Find the DMD community near you and just enjoy talking and sharing experiences. Like I’ve said to others, it is a gift from GOD. You will meet so many people in similar situations, some in better, and even some in worse situations than you. These people you probably wouldn’t even know or would walk past if not for your knowledge of DMD. Look at the positive in all situations when possible. Treat your boys like normal young men who have responsibilities and need discipline at times. Raise them as you would any other young man and with GOD’s helping hand they will become the Men you want them to be. God Speed and much love to you and you two son’s. ~ John
John. I really appreciate you shared about your life with DMD. For the last 5 years I was living with the idea that my son Nehemiah had another muscular distrophy but just one week ago, doctor confirmed that it was DMD in reality.
Now that I see your example and the way you have been able to succeed, I feel much better knowing that my son will have hope to live a normal life just like you are doing. God bless you…
Mr. Rodriguez- Thank you for reading my story and finding something that touches you through my trials. Now I would never tell a parent how to raise their child however a couple suggestions can’t hurt. Raise your son the way you were. Don’t treat him differently than other kids, it’s important that he have the same expectations and discipline that other children would have. Getting the diagnosis is the hard part but now you know and can move forward allowing your son to be the man you build him to be. Like I’ve said before I feel having DMD was a blessing. I have done so many things in my life, met so many people, and had so many experiences that if I did not have DMD I more than likely would never have done. Take it as a gift and let GOD show you the reason and the path. GOD Speed and much love to you, your son, and family. ~ John
I love your story. It makes me think more positively about things. Right now I struggling with the decision if I ever want a trach.
Peter- Thank you for reading my story and finding something that touched you through my trials. I feel compelled to tell you getting a tracheotomy was the best thing I ever didn’t want to do. Seriously no one wants a tracheotomy but post scary times and life changing intubation I would chose 10 times over to get a tracheotomy again. I sleep better, have more overall energy, and my quality of life is way better. I never knew how weak I was due to my poor breathing until I got my trach. If you have the options to take about a trach, or even get one because your numbers are poor then it’s an easy surgery and to bypass the intubation part would be a gift. I hope all works out for you but don’t hesitate to reach out if I can help. GOD Speed my DMD brother. ~John
Thank you for sharing this.
Dear John,
Thank you so much for sharing your life’s story and experiences. Its one thing to face such a situation and another altogether to find a purpose in it. My deepest respects and best wishes to you.
My son was born in 2013 as my second born child and like all other kids was “normal” in the initial few years. He missed a few milestones here and there but caught up mostly a month a too later. Having never heard about DMD nor seen anyone with it we ( me and my wife) never thought even in our wildest dreams that he would have this condition. Good intentioned relatives kept pacifying us that nothing was amiss and that many kids walk, talk or run much later. We continued our lives in “wonderland” thinking all will ease out. A nagging doubt remained about his elevated liver enzyme levels but our inexperienced ped said that it could be a temporary spike. Then 2020 and pandemic happened and the rest is history. Almost 1.5 years later when we took my son out to play he couldn’t climb the swings or see-saws on his own. He started falling frequently and practically dragged himself up the stairs to home. We were alarmed and went to a new doctor ( our third one ) and he immediately asked for a CPK and genetic tests. The results came in a couple of days and the diagnosis was confirmed. Our lives crashed around us. I always felt such things happened to “others” , not to a family with no past history of any genetic disease.
As a family we slowly picked our pieces, started thinking of how to best help him lead his life and mostly to get him the best treatment options.
Acceptance has taken almost 2 years – through rivers of tears, depression and worse. But finally I can say we see a chink of light from behind the dark clouds. We see others with this or worser conditions and think that we have been chosen for this to see how to lead a life as strong people who can set examples for others.
Today as he has turned 10 , we take each day as it comes and don’t give too much thought for what would transpire 5 or 10 years later.
DMD changed our lives, our perspectives and even our diet 🙂 . Hopefully one day when we turn back and see this phase we will be proud of how we held each other firmly and strongly through the darkest hours of our lives and still emerged triumphant.
Regards,
Kartik
Dear John,
Thank you so much for sharing your life’s story and experiences. Its one thing to face such a situation and another altogether to find a purpose in it. My deepest respects and best wishes to you.
My son was born in 2013 as my second born child and like all other kids was “normal” in the initial few years. He missed a few milestones here and there but caught up mostly a month a too later. Having never heard about DMD nor seen anyone with it we ( me and my wife) never thought even in our wildest dreams that he would have this condition. Good intentioned relatives kept pacifying us that nothing was amiss and that many kids walk, talk, run etc much later. We continued our lives in “wonderland” thinking all will ease out. A nagging doubt remained about his elevated liver enzyme levels but our inexperienced ped said that it could be a temporary spike. Then 2020 and pandemic happened and the rest is history. Almost 1.5 years later when we took my son out to play he couldn’t climb the swings or see saws on his own. He started falling frequently and practically dragged himself up the stairs to home. We were alarmed and went to a new doctor ( our third one ) and he immediately asked for a CPK and genetic tests. The results came in a couple of days and the diagnosis was confirmed. Our lives crashed around us. I always felt such things happened to “others” not to a family with no past history of any genetic disease.
As a family we slowly picked our pieces, started thinking of how to best help him lead his life and mostly to get him the best treatment options.
Acceptance has taken almost 2 years – through rivers of tears, depression and worse. But finally I can say we see a chink of light from behind the dark clouds. We see others with this or worser conditions and think that we have been chosen for this to see how to lead a life as strong people who can set examples for others.
Today we take each day as it comes and don’t give too much thought for what would transpire 5 or 10 years later.
DMD changed our lives, our perspectives and even our diet 🙂 . Hopefully one day when we turn back and see this phase we will be proud of how we held each other firmly and strongly through the darkest hours and still emerged triumphant.
Regards,
Kartik
Hey Kartik! I am really sorry I didn’t see your message earlier. I gotta say, it means a lot to me that my life story had a positive impact on you. I totally get what you and your family have been going through. The fear of the unknown, depression, and all those lifestyle changes can really take a toll on you. But let me tell you, your family is incredibly strong. I have no doubt that you guys will overcome these challenges and make life feel normal again. You know, I had the most amazing parents who always pushed me to be the best version of myself, without letting any limitations hold me back. It’s crazy how self-doubt and fear of failure because of our limitations can mess with our heads, right? But trust me, we are our own worst enemies when it comes to that. By the way, if you ever think about life coaching for your son, just let Lindy know. I’m a coach too, and I work alongside some amazing individuals. It really does take a village, right? Anyway, God bless you and your family, and I wish you nothing but the best, always. -John