Do you ever feel like you’re trapped in life that you weren’t supposed to live? Almost like your space-time continuum has been altered by some funny game played by the laws of physics. Let’s meander our way into an event horizon and see where it leads us.
Almost 12 years ago we were blessed with a beautiful daughter who looked normal and perfect. Just like any other baby. She looked just like her sister who was 22 months her elder. Sitting side by side you almost couldn’t tell them apart. As time went on we began to notice something was just not right with her. She struggled with the suck, swallow, and breathe when nursing, and she ended up with aspiration pneumonia a couple of times because of it. We took her to every specialist there was to try and figure it out what was going on, but no one could or would really help us. It was a “she’s gaining weight, so we’re not worried”. Very frustrating as a parent to say the least.
The amount of issues she was exhibiting kept growing and growing. We knew something was wrong but doctors kept saying “she looks perfectly healthy and you shouldn’t worry.” I even had one doctor elude to Münchhausen Syndrome. That didn’t go over too well for us. The puzzling part was she looked like a completely normal child with zero physical traits indicating she was handicapped or disabled. Even we had our doubts at times. For years we were stuck.
Finally, we had a doctor say “she’s never going to reach her peers. She will develop to a point and then level off.” The way he described it was almost like a logarithmic curve.
So imagine starting at zero and then approaching 3-4 years old, but never actually reaching four. Almost like reaching a ceiling. This was devastating news but at least we could manage our expectations from this point forward. Needless to say our life changed drastically on that day, and would only go downhill from there.
After that particular doctor retired, he was replaced with a younger, more ambitious doctor who questioned the results of various tests. We looked at each other like “what tests?” It wasn’t until we had a full Exome Sequencing test of all known genes of my daughter and both of us that we actually made real progress. They were trying to see if there were genetic disorders or mutations passed from either side. After this test, we finally had a diagnosis. Not the diagnosis we were hoping or expecting, but at least a name for what she had. She has a mutation in the WDR45 gene which accounted for all of her disabilities to perfection. The worst part of all was she is not expected to live a long life, and the absolute best case scenario is forty, but most don’t see their 30th birthday. Degeneration comes during the late teens to early twenties, and only goes down from there. At diagnosis, there was only like 40-50 worldwide cases, but as testing has become more known, the number has grown to a little over 500 worldwide. However, she is a rare bird even among the very rare peers that have the same disorder. She is extremely high functioning and she still looks normal. Most with her disorder have distinct characteristics that give you the impression of a developmental issue, but you would not know my daughter has anything wrong with her unless she tried to speak or engage with you.
Vacations…well, life in general, are an extreme challenge for us because she is unable to entertain herself. She can’t do imaginary play and she’s unable to communicate with her peers. She’s basically a four to five year old in a 12 year old body. She will play iPad for a bit, but when making a long trip of more than four hours she begins to breakdown and have problems. Kicking and screaming because she wants out. She’s done and needs a change of scenery. You might as well forget plane trips too. She’s been on two and her behavior was so bad I felt so sorry for the other passengers. This was with sedative medication too. The best we have is a fifth wheel camper and a beach within driving distance. Thankfully, she enjoys camping and we can take our bikes for a ride, hike along the trails, or go swimming in the pools.
Regardless of what we do, she requires constant attention. Not in the sense that she is spoiled but that she can’t be left alone for fear of harming herself. One common facet of her disease is epilepsy, and with epilepsy you can sometimes have brain damage if the seizures are not stopped or identified in time. This is precisely what happened to her. We went to a neurologist at a major southern university, and she basically said we could try medicine but she wouldn’t expect much change. It wasn’t until we met up with the doctor mentioned above that we actually tried medicine, which worked almost instantly! Unfortunately, the damage had already been done and there was no reversing it. Consequently, as she grew older she began to pick at her skin and become obsessed over small blemishes on her arms and legs. She will dig at herself until she bleeds, and then she will squeeze the blood out until it runs everywhere. She always has at least ten band-aids on her at all times, and on occasion will require antibiotic to clear up infections. Sadly, there is not amount of medicine, hand braces, socks, or any other mechanism to stop her. We’ve dealt this particular issue for almost 8 years now, and it has just become a part of life that no one understands. Our daughter is the only one out of the whole group of this disease that skin picks. So there’s really no one to talk about it who can fully understand.
How am I able to be Nudist?
Short answer is: I take what I can get. I know everyone is different, but I’m of the mind set that parents really should not be naked all the time while there are children in the house. I don’t find it harmful per se, but I do feel it can bring a lot of undo attention and perceptions with the protection laws for children. Maybe it’s my upbringing or friends I have that work in social work and have told me horrible stories. Regardless, I don’t participate in whole family nudism. Just a preference. Because of my choices I don’t live naked 100% of the time, and neither do my kids. Well, my special needs daughter has been known to strip naked in the driveway, but she doesn’t know any better. My oldest is scared to death of naked people regardless of what I tell her.
So what do I do? I do the best I can. I will sleep naked sometimes because my special need daughter also has a sleeping disorder, and she will frequently end up in our bed. I won’t sleep naked if she’s in the bed, but I may up to the point she wakes me up to get in. Then I’ll throw on a t-shirt I have beside the bed. I don’t want little hands going various places.
Honestly, the best time for me is early in the morning. I’ve always been an early riser and I use that time to make my coffee, let the dog out, and break open the lid on my laptop. It’s about the only “me” time I get during the day. The only exception is my bath/shower time. I do get that time to myself. I keep clothes with me in the morning just in case a kid knocks at the door or my house starts to wake. It’s unfortunate I don’t have the luxury of basically living clothes free, but I wouldn’t trade what I have for anything else. I just have to be creative.
I really enjoy the outdoors where I can listen to mother nature talk to me, and I can feel her touching me all over with the light breezes and the grass at my feet. Short hikes through the various trails are nice, but you have to be careful when surrounded by the devilishly placed neighborhoods. I just have to be careful of the bugs. Mosquitoes in the south are like tiny spawns of Godzilla, but with the wings of dragons. Those nasty bitches will carry you away and leave huge bite. That’s why it’s always nice to carry sunscreen and bug repellent when you go out, especially if you have water sources nearby since they attract swarms of insects. Personally, I use Skin So Soft because it’s an all in one. I know US Marines who have used this in the swamps of Camp Lejuene near Jacksonville, NC and they swear by it. No shame in it men if it works!!
Business trips are another great escape for me, and provide me an opportunity to spend much needed time in meditation. I’m always stressed when it comes to traveling via plane. I feel like I’m always rushed and having to abide by someone else’s schedule. However, I actually enjoy the flight itself, but the getting to and from the airports is what’s overwhelming. I will usually get something to eat on the way to my hotel, because when I get to the room I won’t be leaving. I need that time to strip off, have a nice drink, and decompress. Weeks like this are when I’m able to fully recharge, and I engulf myself in solitude outside of business hours. Often, I will order myself a massage just to help with relaxation. Hardly will I ever visit the lounge unless they are having free/discounted drinks, and I need a mixed beverage to help my body relax after a long day. I don’t stay too long though. Someone may talk to me and I’m usually much to tired and introverted for someone else.
What are You Waiting for?
Maybe you have a demanding life similar to mine, where you often find yourself swallowed and overwhelmed with no outlet. You think “no one is like me”, and chances are no one is in a situation exactly like yours, but there are people out there who struggle just as much as you do. It makes no difference if you have a spouse/partner who supports you or not with your desire to be clothes free as much as possible, hopefully you have time for one day, one hour, or even a few minutes to strip and free your body, mind, and soul. Hell, I’ve even locked myself in the bathroom or closet just to lay on the floor in my birthday suit.
If you literally have zero places in your home, then maybe you can scope out a place when you go to the store, school, or even an early morning hike before work. When we lived with my in-laws while building a house, I would frequently leave for work super early, and instead of going to the gym before work, I would take a detour up the mountain into the national forest. From there I would find a trailhead to the Appalachian Trail and walk in about a mile. Once I was far enough in, I would take off my clothes and either do some hiking or lay out a towel and mediate while the sun came up over the mountains. I’ve even used the gravel service roads which snake up the mountain. I just had to make time.
I’ll leave you with this. The rat race we call life will grab you by the throat and shackle and enslave, but no matter what is thrown at you, you must always make time for you. If you’re the glue that holds everything together in your family, then you must be allowed time to reboot, recharge, and replenish your empty bucket. You’re no good to anyone if you’re in bed or locked up in the asylum. Even as a last resort you can go to your car, and drive off for a bit to strip and lay in the car. It’s nice feeling the warm sun on you while laying there. Summer’s around the corner and I could find myself getting lost on long road between these farms.
if you’re an aspiring nudist or an all over tanned veteran, please share your advice of how you handle life as a nudist. I’m sure your ideas will help someone find new time to free themselves.
Break the shackles and remove your fears, for there is no better freedom than the freedom of naked.